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Advice please

littleedie

Registered User
Mar 2, 2014
16
I am sole Carer for my father, he lives alone a 40 minute drive fromyself. He is constantly ringing me at all times asking if I can take him home, he is at home, and although he recognises all his belongings, furniture etc, he keeps saying it's the same as his home bit not his, he says there are two places the same. He often leaves the house in the middle of the night to go "home", I have a door sensor fitted so luckily 1st response are alerted and come out to him. I know you are supposed to go along with what they say because to them it is real, I have conversations for 50 minted or so with him to try to reassure him he is safe where he is etc, it is very draining, I am constantly worried!

Sorry to waffle on, just wondered if anyone else had this situation and could offer advice, thank you
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,113
Kent
Hello littleedie

I`m sorry to hear about your father , especially as he lives a fair distance and it would be impossible for you to go round to him after every phone call.

Perhaps it might work if you tell him you can`t take him today because you are working/busy/have a bad cold/out shopping etc. but you`ll take him home `tomorrow`.

It sometimes worked with my husband.
 

Noorza

Registered User
Jun 8, 2012
6,542
It is exhausting and many people with dementia wander. It may be that they are looking for their childhood home, or they are confabulating so they recognise their things as home but with your dad in the wrong place, perhaps it should be at his first home's location.

All you can do is keep him safe you can't reason with him, he won't be able to understand. Confabulation is where some of what they think is real other bits are not deliberately made up but the mind fills in the blanks with unreal things involuntarily.

It is good that first response are looking out for him, but if it is happening too frequently he may not be able to safely remain in his own home. That is a very difficult decision to make and one I haven't faced, yet.
 

littleedie

Registered User
Mar 2, 2014
16
Thank you for you quick reply. Unfortunately he is just adamant that he need to get home, and he goes out anyway, as I say during the night first response attend, during the day he just goes out anyway, and neighbours will ring me. If he rings me during the day I tell him to wait where he is for me and drive over, then I generally take him somewhere return home. But he will ring me again when I get home and so it repeats all over again.

I really am at a loss.
 

Noorza

Registered User
Jun 8, 2012
6,542
There are no easy answers, as he will forget the conversations but remember the feelings that he wants to go home.

I would call social services this morning and ask for an assessment to be done you can get them through your local council. He needs an OT to come and you to be there to assess what can be done to keep him safe, mention that he is a vulnerable adult at risk.

I would also ask for a carers assessment for yourself.

We read too many times in the newspapers of people with dementia who wander, they can go missing and be a real danger to themselves.

I would be considering some kind of gps tracker device so he can be found maybe on his keys.

And be considering some form of 24/7 care for him either in his own home or in a nursing home.
 

littleedie

Registered User
Mar 2, 2014
16
Thank you for your insight, he is doing this constantly (everyday), I know I have very difficult decisions to make in the future, if he does ever go into care it will break my heart (it is breaking now), but also I have no idea how that would be funded, and who makes the decision,

I really am feeling low, I cannot live my own life, I am neglecting the rest of my family and my job, and am tearful all the time.

It's a terrible disease!
 

Noorza

Registered User
Jun 8, 2012
6,542
Thank you for your insight, he is doing this constantly (everyday), I know I have very difficult decisions to make in the future, if he does ever go into care it will break my heart (it is breaking now), but also I have no idea how that would be funded, and who makes the decision,

I really am feeling low, I cannot live my own life, I am neglecting the rest of my family and my job, and am tearful all the time.

It's a terrible disease!
He's wandering everyday, this is a serious situation where he could be harmed and you are exhausted. I honestly think that when they wander and you can't be there 24/7 no one could, you'd have to sleep. It is probably time for a care home, he has to be safe, fed, warm, clean and secure.

Does he own his home or savings over £23,500? There are a lot of people on here who know all about funding. You will get a lot of support so hang on in there.
 

littleedie

Registered User
Mar 2, 2014
16
Thank you for your reply, tried to look at the link but it takes me to the wrong place I think.

I really appreciate your replies
 

Noorza

Registered User
Jun 8, 2012
6,542
Not to worry if you wish you can ask here someone is bound to know the answers.
 

Katrine

Registered User
Jan 20, 2011
2,839
England
I do believe, from personal experience, and from what I read on TP, that eventually the first stage of living with dementia progresses to the next stage. In the first stage carers support independent living for as long as that person can manage this. Note that I say as long as the person with dementia can manage, not the carer. This is because the carer cannot halt the disease process, and neither can the person they care for. No matter how much love, effort and willpower is applied, damage to the brain keeps on going.

The next stage in caring is to ensure safety. The value of independence to them is now in the past. Fear and confusion increase and the person we care for makes regular cries for help. These take the form of: frequent phone calls, demands that you deal with the ever increasing domestic crises, sundowning and nightmares, knocking on neighbours' doors, wandering, complaints to the bank or police about imagined crimes, aggression towards caregivers, etcetera.

This person no longer feels safe living at home. What once was a haven is no longer so, and they set off physically or emotionally in search of their idealised 'Home'. Some people are able to manage at this stage with a suitable team of carers, both family and paid, to support them at home. The person with dementia now needs 24/7 supervision. This is where most home care plans fall down because paid night care is too expensive for the state to pay for.

This is when the person with dementia usually needs to relocate to a residential care facility. The benefits here are better resources for personal care and social activities, laundry and meals provided, dementia trained staff (not always!), teams of staff whose energy is not drained by unreasonably long caring hours. The new resident may demand rescue from being looked after, but it's really the dementia that is imprisoning them. The CH is a place of safety now, which their former home out in the world can no longer be.

I am sure I'm not telling you much that you don't already know. I just wanted to lay it out before you to indicate that, from what you write, the first stage of dementia care for your dad is already over. He needs effective team care 24/7. My mum has received this in her own home for over 6 years. My MIL has received this in a CH for nearly a year. The difference between them is mainly financial. Well, that's not true. They have very different personalities, life experiences, and different dementia behaviours and challenges. What I meant was that for my mum home care was affordable, while for MIL it was not, once the family team's efforts and availability no longer met her needs.

However, MIL would never have accepted live-in carers. She is physically active and would have run away, locked them out and probably yelled and hit out at them in her frustration. She attempts to do all that now, but obviously the CH staff have greater control than they would in a normal domestic environment. My mum has been horrible to some of her carers with bullying, feigning illness, refusal to get out of bed, etcetera. She's now a pussycat and enjoys her care, but while she still had fantasies of getting her independence back she could be pretty manipulative.

If you and your dad are not yet ready for him to move to residential care you could consider employing a live-in carer for a couple of weeks, just to see if this might work longer-term. It is not cheap. Currently my mother pays £600 p.w. for carer's charges and travel, plus another £100 p.w. in care agency fees. This is per carer, she now has 2 at once, but managed with one at a time for several years until her night care needs made a significant impact on the ability of one person to manage her needs 24/7 while getting adequate sleep.
 
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littleedie

Registered User
Mar 2, 2014
16
Thank you for the reply, it's a very difficult situation, we have no way of paying out the sort of money you mentioned.
 

Katrine

Registered User
Jan 20, 2011
2,839
England
That's the dilemma isn't it, we want the very best for our loved ones but in practice our options come down to the resources we have available, both money and people. Family carers should not have to damage their health, personal relationships or earnings but often this can happen by default as we manage things day to day, just about keeping our heads above water. The only thing we can do is to plan ahead. A crisis will eventually happen, but with luck we can meet it as a controlled crisis.
 
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Grandma Joan

Registered User
Mar 29, 2013
276
Wiltshire
My MIL is living independently but I don't know for how much longer. She is under the illusion that she is completely independent and is not capable of acknowledging that we do everything for her. She was such a proud lady that it offends her pride to think otherwise. A real battle of wills and moral dilemma for us all.

I sympathise with you and recognise the symptoms. Katrine has given a really comprehensive and useful reply.

I remember telling the GP when my Dad was ill that if I was a millionaire I would employ home carers to keep my Dad at home where everything was familiar and safe for him. Unfortunately we aren't millionaires and Dad had to go into a home. And that's another story.
 
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littleedie

Registered User
Mar 2, 2014
16
It's reassuring to know that others totally realise exactly what you are going through. I know I will have to make difficult decisions in the future.

My dad seems to be ok at home at the moment in so much as he has not done anything dangerous (apart from going out at night). He washes, dresses appropriately and microwaves meals etc. I will have to take one day at a time I suppose.
 

littleedie

Registered User
Mar 2, 2014
16
Well 3 phone calls last night 3.00 am 3.35 am tried to reassure my dad, to go to bed, he was safe where he was and I would pick him up in the morning, he has just rung again and said he is waiting for me and where is he going to go ?????
 

Merrymaid

Registered User
Feb 21, 2014
304
Hi my Mum lives with me and has done so for many years, I am her sole carer. She will put her coat on and pack up random belongings every day to go 'home'. When I ask where home is she refers to the house I grew up in which we all left over 40 years ago. It actually does not exist any more. I remind her that this is her home & she has lived with me for many years, she asks why she can't remember & I just say it has slipped her mind nothing to worry about. She then quite happily unpacks and settles down again. I will often then talk through the several house moves we have made and discuss a few memories with her. I know some recommend that you should play along with the sufferer but this didn't work with Mum. Hope you find a solution soon.
 

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