• All threads and posts regarding Coronavirus COVID-19 can be found in our area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Will he change his mind?

Hazel P

Registered User
Oct 30, 2018
13
My father has been living alone with Alzheimer's for a couple of years, continuing to drive and look after himself with increasing use of lists and other memory aids. In the last few months I've seen a deterioration in his ability to get to appointments and an increase in the frequency of confused spells. I'm keen to introduce regular care/companionship visits now, but he consistently refuses, saying that he wants to live alone, maintain independence & die alone. This is consistent with his character pre-dementia. My question is this - will he change his mind about accepting help? Appreciate other's insights into this. I've been hoping he'd come round to my way of thinking, but as the disease progresses its obvious that rational thought becomes more elusive.
 

karaokePete

Registered User
Jul 23, 2017
5,652
N Ireland
Hello @Hazel P, you are welcome here and I hope you find the forum to be a friendly and supportive place.

Do take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc. Unfortunately it's common for a person with dementia to resist care in any form but there does come a time when needs outweigh wants and it's for that time that reading up on the system in the Factsheets may be useful.
Now that you have found us do keep posting with any questions or observations.
 

Elle3

Registered User
Jun 30, 2016
645
My father has been living alone with Alzheimer's for a couple of years, continuing to drive and look after himself with increasing use of lists and other memory aids. In the last few months I've seen a deterioration in his ability to get to appointments and an increase in the frequency of confused spells. I'm keen to introduce regular care/companionship visits now, but he consistently refuses, saying that he wants to live alone, maintain independence & die alone. This is consistent with his character pre-dementia. My question is this - will he change his mind about accepting help? Appreciate other's insights into this. I've been hoping he'd come round to my way of thinking, but as the disease progresses its obvious that rational thought becomes more elusive.
Hi Hazel, welcome to the forum.

I'm afraid from my experience with my dad, the short answer is probably not, as the dementia worsens he will probably become even more stubborn and confused about accepting help. My dad was also living alone and driving and was very independent and preferred his own company. As his Dementia progressed and he became more forgetful and confused, my dad refused to go anywhere if it involved being with other people, he alienated himself from his one and only friend and his friend couldn't cope with dad anymore, he refused to accept help and he would try to hide if he saw someone coming to his front door, even if I was with him.

When Social Services became involved even the SW agreed dad wouldn't cope well with 'strangers' entering his home, as he hated visitors, he would also probably forget they would be coming and if not, he very likely would purposely just go out to avoid them. He would probably blame them for things going missing and become more stressed. We did manage to get him to agree to care line being installed (he forget he'd agreed almost instantly) they installed door sensors to try and stop his night time wanderings, but after a week he had ripped it out and it caused more problems than it solved.

I obviously stopped him driving and managed to get him to agree to selling his car (took a lot of effort), but regarding accepting help, he would only accept help from me, but usually under the disguise of me coming to take him out for lunch or shopping etc. Then when we returned I would do things for him, like his housework, washing, prepare meals etc but even then he would try telling me he could do it all himself, although he couldn't. It's only as his Dementia progressed I found that he accepted my help more, but then he stopped recognising me as his daughter, but just as someone who he recognised, took him out and took care of him.

It was when he no longer became safe still living alone, that I had to call in Social Services again and we jointly took the decision that dad needed to be in a care home. I'm afraid I had to find him a suitable care home and take him there myself without discussing it with him, as he never would have agreed to it, it was all very sad and I felt very guilty, but it had to be done for his own safety.

When he first went into care he didn't settle and kept trying to escape and he did actually manage to escape, which brought us to crisis point and the home said they couldn't cope with him, so I had to find a different care home more able to cope.

He has been there now since May and his Dementia is a lot worse, he needs the care that a 24/7 care home can give him and most of the time he accepts it, although he does have many bouts of aggression and can become very verbally abusive but this care home copes with that very well and it helps that there are not that many residents in his unit so he can find places where he can still be alone.

Your dad may be different as his Dementia progresses, however just be warned if he is stubborn now, sometimes that only gets worse, so you may more than likely have to go against his wishes for his own good.

Take care.
Elle x
 

LHS

Registered User
Oct 5, 2018
72
My mum was a very proud, independent and stubborn woman before she was diagnosed with Alzheimer's. Now about 18 months later she is twice as stubborn as her illness progresses. She still lives alone in her own house and that is something that I am keen to support for as long as possible. However with her stubbornness she refuses to take medicine and refuses to really even acknowledge that anything is wrong apart from having a few memory issues. Just for clarification, most of the time she struggles even getting two forks and two knives out the drawer for dinner when I come round to cook tea.

To prevent arguing and both of us getting upset, I have now learned to go with the flow and not question her and her stubbornness. The issue now is that she has started to have falls, done a bit of wandering and is not eating properly and she really does need some external assistance, not just me calling round when I can. But I just know that she will continue to refuse any kind of assistance coming into her home. So it's probably going to have to progress to the stage where something dreadful happens or she just gets so confused that she can't offer any resistance to assistance.

Other posts have raised the issue about Alzheimer's creating a lack of awareness by the person of their condition and I am convinced that if a person was already pretty stubborn in their outlook that this means they get twice as stubborn.
 

Goldie Girl

Registered User
Oct 20, 2018
40
West Midlands
Hi Hazel, welcome to the forum.

I'm afraid from my experience with my dad, the short answer is probably not, as the dementia worsens he will probably become even more stubborn and confused about accepting help. My dad was also living alone and driving and was very independent and preferred his own company. As his Dementia progressed and he became more forgetful and confused, my dad refused to go anywhere if it involved being with other people, he alienated himself from his one and only friend and his friend couldn't cope with dad anymore, he refused to accept help and he would try to hide if he saw someone coming to his front door, even if I was with him.

When Social Services became involved even the SW agreed dad wouldn't cope well with 'strangers' entering his home, as he hated visitors, he would also probably forget they would be coming and if not, he very likely would purposely just go out to avoid them. He would probably blame them for things going missing and become more stressed. We did manage to get him to agree to care line being installed (he forget he'd agreed almost instantly) they installed door sensors to try and stop his night time wanderings, but after a week he had ripped it out and it caused more problems than it solved.

I obviously stopped him driving and managed to get him to agree to selling his car (took a lot of effort), but regarding accepting help, he would only accept help from me, but usually under the disguise of me coming to take him out for lunch or shopping etc. Then when we returned I would do things for him, like his housework, washing, prepare meals etc but even then he would try telling me he could do it all himself, although he couldn't. It's only as his Dementia progressed I found that he accepted my help more, but then he stopped recognising me as his daughter, but just as someone who he recognised, took him out and took care of him.

It was when he no longer became safe still living alone, that I had to call in Social Services again and we jointly took the decision that dad needed to be in a care home. I'm afraid I had to find him a suitable care home and take him there myself without discussing it with him, as he never would have agreed to it, it was all very sad and I felt very guilty, but it had to be done for his own safety.

When he first went into care he didn't settle and kept trying to escape and he did actually manage to escape, which brought us to crisis point and the home said they couldn't cope with him, so I had to find a different care home more able to cope.

He has been there now since May and his Dementia is a lot worse, he needs the care that a 24/7 care home can give him and most of the time he accepts it, although he does have many bouts of aggression and can become very verbally abusive but this care home copes with that very well and it helps that there are not that many residents in his unit so he can find places where he can still be alone.

Your dad may be different as his Dementia progresses, however just be warned if he is stubborn now, sometimes that only gets worse, so you may more than likely have to go against his wishes for his own good.

Take care.
Elle x
Hi, Elle sorry for jumping on someone else's thread but your story mirrors my Mum exactly. Her care home can no longer cope with her and the Hospital has said she needs an EMI care Home. The only thing is that's what we thought her present one was we didn't have a lot of choice because of her challenging behaviour and had very little support from the social worker. So my question is how did you go about finding your Dad's new car home? I would like to try and get it right this time. Thanks .
 

Sirena

Registered User
Feb 27, 2018
2,294
It's very unlikely he will accept help, you will end up having to arrange it for him. My mother is not in general averse to help, but she solidly maintained she didn't need any, even when it got to the stage she couldn't do basic things like make a cup of tea, provide herself with a simple meal, or use the washing machine. Her reasoning abilities had shrunk to such an extent that she didn't really know the things she couldn't do.

To begin with I arranged a carer to come in for several hours a day - I never said the word carer, I said a nice lady is going to help with things you find difficult like carrying shopping and getting the cat to the vet (of course the carer did a huge amount more than that). Earlier this year I moved my mother to a care home because her dementia deteriorated and she was wandering, at risk of falls, and very anxious when left alone. If I had asked she would probably have refused to go but by that point she had no capacity to make decisions. It was difficult and stressful having to make the decisions and organise it but she loves the care home where there is always someone kind to help her with whatever she needs.
 

Elle3

Registered User
Jun 30, 2016
645
Hi, Elle sorry for jumping on someone else's thread but your story mirrors my Mum exactly. Her care home can no longer cope with her and the Hospital has said she needs an EMI care Home. The only thing is that's what we thought her present one was we didn't have a lot of choice because of her challenging behaviour and had very little support from the social worker. So my question is how did you go about finding your Dad's new car home? I would like to try and get it right this time. Thanks .
Hi Goldie Girl, I also thought the first care home I placed my dad in was an EMI Care home and dedicated to just Dementia sufferers. It was, but some EMI care homes are able to cope better with challenging residents than others, this one couldn't.

We were very lucky as we had a very good and supportive Social worker, although in finding a new care home for dad it was still my responsibility as he was self funding. The SW just provided me with a list of EMI care homes but advised me to look at the care homes with dedicated units, sometimes called Dementia+. She advised me to go with a list of questions and to be totally honest with them about dad's behaviour. I also viewed the homes in a different way, I looked at their security, for calm environments, not too much noise, places the residents could find to be alone other than their rooms and I asked them how they would deal with certain behaviour.

The unit dad is in, is part of a larger care home, but his unit for challenging residents will only have a max of 16 residents at any time. It was also quite new when dad joined so there were only 5 other residents and they explained they only accepted one new resident a week to ensure that they got to know the person and that they settled in OK before someone else new joined them. The staff ratio is also much better 3 residents to 1 staff, so ask about this.

They had also thought of simple things to keep the residents calm, like there were no mirrors in rooms to ensure the residents didn't get upset by their appearance, which was good as my dad no longer recognised himself as he thought the old man he saw in the mirror was spying on him which he would get upset about. They could also wander around the unit but without feeling confined, staff will take residents out for walks too. I also saw how they dealt with the residents when their behaviour started to escalate, sometimes they just left them, but kept an eye on them, I could see they were very flexible, no set rules, it depended on the resident and the situation on how they dealt with them, they also don't believe in giving calming drugs unless absolutely necessary.

So when you view the care homes, ask them how they would deal with your mum if she became challenging and go prepared with questions. Also visit more than once at a different time of day, a good time is later in the afternoon as sun-downing kicks in and the residents become more challenging so you can see how the staff cope them.

Good luck, I hope you find somewhere.
Elle x
 

Hazel P

Registered User
Oct 30, 2018
13
Thanks everyone for the responses to my post. It's very reassuring to know there are others in remarkably similar situations, and it helps me to think through some options. Thank you