Stuck in the middle

[Roxymoo]

Hi

Not sure if anyone has any advice. My Dad has dementia, started about 6 months ago and has got progressively worse. My mum is his main carer, she used to be a nurse so is well used to that practical side of things but not so much the emotional side. They are mid 80's but my Mum is very physically and mentally fit, and my Dad is mobile.

They have never particularly got on well, both having very different interests. My Dad has always been very sociable and out and about whereas my Mum has no friends and is happy on her own doing her garden. In the last 3 months she has confiscated his bus pass and his bank cards as she doesn't think he can cope catching the bus into town and doesn't trust him to take out all his money and lose it etc. I take him out once a week just me and him for a coffee and short walk but I feel he needs more than this. I have two young children and a part time job so its not easy for me to take him out much more in a week. My mum will not go with him so I am stuck feeling he should have the chance to use his bus pass. My Dad is now pleading with me to help him get his bus pass back but my Mum will not budge. I don't know if shes being overly controlling, but then she sees his really bad days and it can in no way be easy for her. I am so stuck as to what to do.I feel he would be ok on the bus but my mum feels so strongly he shouldn't have it I think we'll fall out and I don't want that at all. If I am completely honest I feel like he is imprisoned in his own home - he says he has no dignity left. His bus pass was his life line and I feel whilst he is lucky enough to still be mobile whats the harm in him taking the bus into the town and back. Should I be agreeing with my Mum on this or should I push it. Its such a horrible situation. I love my Dad and it breaks my heart to see him not be able to do these simple things as I know the illness will just worse in time.

Sorry for the rambling. Its actually helped just writing this down.

 

[Louise7]

Have you considered a day centre for your Dad? My Mum went to one and was collected and dropped off afterwards. They did various activities and it would keep your Dad occupied but safe and also give your Mum some respite. Mum was initially reluctant to go but I referred to it as a 'club' rather than day centre and once she'd settled in she really enjoyed it. This was arranged through social services - ask for a care needs assessment and hopefully they will be able to help.

 

[Sirena]

You're right that your mum lives with him so sees all his behaviours in a way that you don't.

Will your mother talk about why she thinks he won't cope on a bus? Usually people stop their loved ones doing things because of a previous mishap/disaster - e.g. got lost and had to be brought home by the police. So either something like that has happened, or as you say she is being overly controlling and trying to forestall any issues and keep him safe at all costs.

Personally I would let the person do the maximum they can, while still able. And even if they have got lost once, I wouldn't necessarily remove their means of going again. One afternoon fairly early in her dementia, my mother was on the high road where she'd gone every day for decades, and couldn't remember how to get home (it was a 20 minute walk). She went into the opticians and they rooted through her handbag to find out who she was, and called the police, who called me and took her home. They were very nice about it. I was concerned but I didn't prevent her going out again - I couldn't, I lived a long distance away. About 6 months later she had to have daily carers and so was accompanied when she went out, but in that 6 month interim I was never made aware of her being 'lost' again.

 

[marionq]

Your Dad sounds as if he'd love a day centre. Phone the local daycentres directly and put his name on the waiting list then get his CPN, GP or SW onside to back you up for a place urgently. Our LA runs a number of daycentres which are mixed dementia and others. Makes a huge difference to carers.

 

[Ohso]

I tend to think your mum knows best and although you say they dont have a great relationship, that might not be the full story and she may care for him and not want to feel responsible for him getting lost or hurt and might spend all her time worrying about him while he is out.
If you truly feel she is holding him back, why not arrange to go out with him, but let him take the lead, ask him where he wants to go, what he would do for example if he did have his bus pass, then do just that, catch a bus with him, get him to tell you where and what you are doing, let him order food and pay for it, you may still feel that he is perfectly capable and then will have a good counter argument for your mum or....you may find she knows him best, either way it might be reolved, for now....as we all know, dementia only gets worse and eventually he will not manage, so as others have said, maybe now is the best time to get him socialising at the day centres.

 

[Roxymoo]

Thank you so much for the above advice. Day care centre sounds like a good idea I will look into that. I suggested going on the bus with him but my mum said I was pandering to him and he should just accept he can’t do that anymore and kept asking him what on earth does he need to go in to town for? She doesn’t seem to understand he needs an outside life. I’ll take him on the bus too and try not to help too much to see how well he’d manage on his own.

Sirena I’m glad to hear your mum still got out and about for as long as she could for that six months. That makes me think my dad could have the same and really what’s the worse that could happen. I’ve got some of those cards he can keep on him that have my contact details etc should he get lost.

Fingers crossed he likes the idea of the day care centre or club as I might call it too.

Thank you again.

 

[Rach1985]

Thank you so much for the above advice. Day care centre sounds like a good idea I will look into that. I suggested going on the bus with him but my mum said I was pandering to him and he should just accept he can’t do that anymore and kept asking him what on earth does he need to go in to town for? She doesn’t seem to understand he needs an outside life. I’ll take him on the bus too and try not to help too much to see how well he’d manage on his own.

Sirena I’m glad to hear your mum still got out and about for as long as she could for that six months. That makes me think my dad could have the same and really what’s the worse that could happen. I’ve got some of those cards he can keep on him that have my contact details etc should he get lost.

Fingers crossed he likes the idea of the day care centre or club as I might call it too.

Thank you again.

The cards that you have with your contact details on, did you do that yourself or get them from somewhere?

 

[Louise7]

Help cards are available for free from the Alzheimer's Society: https://www.alzheimers.org.uk/get-support/publications-and-factsheets/helpcards

 

[Rach1985]

Help cards are available for free from the Alzheimer's Society: https://www.alzheimers.org.uk/get-support/publications-and-factsheets/helpcards

Ah cool thank you very much x

 

[Roxymoo]

Great idea to let him get bus and arrange to meet in town. It’s really helped getting some ideas and thoughts thank you x

 

[Sirena]

I know we're all guessing about your mum's motivations, but I wonder if part of it is that doesn't want him going out on his own in case anyone 'notices' he has dementia. She sounds like a private person and wouldn't want others knowing and having to intervene by helping him. If that's the case you'd have to approach the day centre idea a bit carefully.

 

[Rach1985]

My mum has this issue with if people notice about my Dad, and will people judge us for not looking after him properly if he goes wondering. No matter how much I tell her not to care what other people think I know that she does. So we have told a couple of trusted neighbours that my dad has Alzheimer’s and given one of them a key. But I know she is still concerned as to what other people will think, not necessarily of him or him being embarrassing but of us not looking after him ‘right’

 

[Sirena]

My mum has this issue with if people notice about my Dad, and will people judge us for not looking after him properly if he goes wondering. No matter how much I tell her not to care what other people think I know that she does. So we have told a couple of trusted neighbours that my dad has Alzheimer’s and given one of them a key. But I know she is still concerned as to what other people will think, not necessarily of him or him being embarrassing but of us not looking after him ‘right’

Yes that is a good point, I felt considerable pressure from my mother's neighbours that I was not 'not doing enough' to make sure she was safe/cared for. Generally outsiders just don't want to be faced with dementia, they want it to happen 'indoors'. The one neighbour who was supportive (my mother's best friend) understood the situation because her own husband had dementia.

 

[Rach1985]

Yes that is a good point, I felt considerable pressure from my mother's neighbours that I was not 'not doing enough' to make sure she was safe/cared for. Generally outsiders just don't want to be faced with dementia, they want it to happen 'indoors'. The one neighbour who was supportive (my mother's best friend) understood the situation because her own husband had dementia.

Yes this is a thing my mum is struggling with most. And if other people think we are doing it well or right then that must be the case. Even though they have never dealt with it or cared for a person with dementia themselves
This might not be why @Roxymoo mum might be concerned about letting him out, but I know it is an issue that I think affect women more than men. What if I’m not doing it good enough

 

[canary]

The point about not letting him out in case other people think that you are not looking after him properly is a fair point, but doesnt explain why @Roxymoo s mum is concerned about him taking money out of the bank and losing it. Wandering and getting lost, and losing the ability to understand about money are things that we have all seen and are absolutely typical of mid-stage dementia.

I remember mum at that stage when she was wandering around, getting on random buses and getting stranded and having hundreds of pounds in her pockets and/or handbag. I found several large stashes of money hidden in her home and at one point when the police picked her up she was found to have £700 in cash, loose in her pockets. There was a lot of money missing from her accounts, though - she would withdraw £100 every few days and I dont know what happened to it. Roxymoos mum may have valid concerns.

I know we dont want to be over protective, but Im wondering if Roxymoo is seeing "host mode" - when people with dementia can sort of pull themselves together in front of people who dont see them regularly, and appear much more capable than they really are.

 

[Rosettastone57]

The point about not letting him out in case other people think that you are not looking after him properly is a fair point, but doesnt explain why @Roxymoo s mum is concerned about him taking money out of the bank and losing it. Wandering and getting lost, and losing the ability to understand about money are things that we have all seen and are absolutely typical of mid-stage dementia.

I remember mum at that stage when she was wandering around, getting on random buses and getting stranded and having hundreds of pounds in her pockets and/or handbag. I found several large stashes of money hidden in her home and at one point when the police picked her up she was found to have £700 in cash, loose in her pockets. There was a lot of money missing from her accounts, though - she would withdraw £100 every few days and I dont know what happened to it. Roxymoos mum may have valid concerns.

I know we dont want to be over protective, but Im wondering if Roxymoo is seeing "host mode" - when people with dementia can sort of pull themselves together in front of people who dont see them regularly, and appear much more capable than they really are.

I think the point about host-mode is actually a very good one in this scenario. Having read through the posts again I think that the idea that host-mode is in operation is probably the best explanation. My gut Instinct here is that the mum is probably right difficult situation though

 

[Sirena]

I agree it's entirely possible there have been incidents the OP is unaware of, and it could be that mum doesn't want to cause worry by revealing them. Alternatively she could be over-reacting and think she can't let him have any agency just because he's been diagnosed. If she explained her reasons the OP could then support her decision and focus on helping her father in other ways (like a day centre). If she refuses to discuss it the OP is just using guesswork (as are we!)

 

[canary]

I think a lot of parents dont like to tell their children what is happening. My FIL had Vas dem, but my MIL didnt tell her (adult) children about anything and I was completely clueless. I look back now and realise what a hard struggle she must have had, but I was completely oblivious.

I know I havent told my own kids everything about their dad. They are not aware that I am having to shower him and catheterise him, for example. And they certainly havent been told about his sexual disinhibition

 

[Roxymoo]

Hi sorry late to read the latest replies to this. But op comment about host mode is starting to make sense. I took my dad out Saturday for breakfast and he wanted to pop to shops. He wanted a new shirt and even though I know he has loads it was only £5, I thought why not but it was clear he was just going to walk out of the shop with it. Which kind of proves my mums point about him not being able to handle money. He also wanted to go for quite a long walk which I worried he would struggle with but he said he was fine. That day he slept for ages and was so worn out and confused when he woke up he definitely overdid it. Which proves her point about him wondering around in the bus and overdoing it. I had a good chat with my mum today and she even said it’s as though nobody believes how bad he is and she’s making it up. He’s got a review apt coming up with the neurologist and she said he’ll probably come across really well at that apt. But if host mode is a common thing hopefully they’ll be aware of that. So after all that I’m really seeing it from my mums point of view now. He will keep asking about his bus pass though and I’m just not sure what to say. My mum will just point blank say he can’t have it but is there a nicer way to say it?
I’ve found a group that runs once a week for him to go to, but day centres seem to be mostly ladies going to them not sure why?!