My Dad is deteriorating and his joy's being taken from him

[DollyClaire]

Im helping to take care of my Dad in his later stages of dementia. Im also watching my Mom, his primary caregiver be emotionally and verbally abusive to him. I totally get how hard it is on her, but its like she doesnt see how ill he is. She treats him the same as if he was still her husband, but he's not. To top it off, theyve now taken his only joy away from him. He loves playing his penny whistle but because he plays the same song over and over, they hide it from him and wont let him play it at home or his activity care centre.
Its hard enough watching my Dad deteriorate, but being abused and having his joy taken from him on top is so hard to watch.
I want to do more to help him but dont know what to do without upsetting things.

 

[northumbrian_k]

Hi @DollyClaire and welcome to Dementia Support Forum our friendly and helpful community. I am sorry to hear about your Dad. It sounds as though your Mom is at the end of her tether and in need of extra support. Repetitive behaviour can be very stressful for carers and I can well see that the same tune played on a penny whistle could easily drive anyone mad. Having said which, their's no excuse for emotional and verbal abuse. I'm not sure where you are located but there may be a way of reporting this as a safeguarding issue for both your Dad's sake and your Mom's.

 

[Neveradullday!]

Hi @DollyClaire
Perhaps you could persuade your Mom, as a compromise, to let your Dad play his penny whistle for a limited time each day. Maybe emphasise how music can reach a still healthy part of a PWD's brain and give them some joy?

It's an achievement he can still play his penny whistle, given how this disease takes away so many skills.
Tell your Mom to try to put herself in his shoes.

 

[StressedDaughter]

Maybe he could play it while you are helping to care for him. That way your Mum gets a break - it would drive me to the end of my tether too.

 

[DollyClaire]

Hi @DollyClaire and welcome to Dementia Support Forum our friendly and helpful community. I am sorry to hear about your Dad. It sounds as though your Mom is at the end of her tether and in need of extra support. Repetitive behaviour can be very stressful for carers and I can well see that the same tune played on a penny whistle could easily drive anyone mad. Having said which, their's no excuse for emotional and verbal abuse. I'm not sure where you are located but there may be a way of reporting this as a safeguarding issue for both your Dad's sake and your Mom's.

Thank you for replying with such wisdom. Yes Ive been advised this. I appreciate how hard it is but he needs specialist attentive care which he isnt getting. Like you say its for everyones sake.

 

[DollyClaire]

Hi @DollyClaire
Perhaps you could persuade your Mom, as a compromise, to let your Dad play his penny whistle for a limited time each day. Maybe emphasise how music can reach a still healthy part of a PWD's brain and give them some joy?

It's an achievement he can still play his penny whistle, given how this disease takes away so many skills.
Tell your Mom to try to put herself in his shoes.

Oh believe me I have__ many times over. For whatever reason she cant put herself in his shoes. All i can think is how sorry everyone will be when he no longer plays it. How quiet the house will be

 

[DollyClaire]

Maybe he could play it while you are helping to care for him. That way your Mum gets a break - it would drive me to the end of my tether too.

Yes he can play it as much as he wants to when he's with me. I wish I could be with him more often but sadly its not to be right now.

 

[Violet Jane]

It sounds as if your mother has reached carer breakdown. Repetitive behaviours can be very draining if you are exposed to them 24/7.

You say that you help out but it's obviously not enough for your mother. How often are you there and does she get any breaks at any other times? Perhaps you should be working with her to organise more and longer regular breaks. Have she / you considered day care at home for your father (so your mother can go out) or respite in a care home for a week or two? Having proper breaks may help your mother cope better with the strain of being a full-time carer.

 

[DollyClaire]

It sounds as if your mother has reached carer breakdown. Repetitive behaviours can be very draining if you are exposed to them 24/7.

You say that you help out but it's obviously not enough for your mother. How often are you there and does she get any breaks at any other times? Perhaps you should be working with her to organise more and longer regular breaks. Have she / you considered day care at home for your father (so your mother can go out) or respite in a care home for a week or two? Having proper breaks may help your mother cope better with the strain of being a full-time carer.

Ive tried for many years to get her in house care help but she refuses. She is adamant she can cope and says my Dad doesnt want anyone and she doesn't want anyone in her house. I agree she has reached carer breakdown but she has to admit she needs help which she wont. Your questions are somewhat personal. I want to be more involved but it is currently not possible as she has shut me out. Its sadly a regular occurrence and it is complicated but it is sibling related and there is nothing I can do

 

[Violet Jane]

In those circumstances and if you're really concerned about your father's welfare I think that all you can do is contact Social Services and report a safeguarding concern. That won't help family relationships but I don't know what else you can do if you've got nowhere trying to address your mother's behaviour towards your father. But you need to offer up much more than your mother not letting your father play his whistle. After all, the day centre won't let him play it either, presumably because the people there find it very annoying too.

I wish you the best of luck with resolving this situation. It's very difficult for everyone.

 

[DollyClaire]

In those circumstances and if you're really concerned about your father's welfare I think that all you can do is contact Social Services and report a safeguarding concern. That won't help family relationships but I don't know what else you can do if you've got nowhere trying to address your mother's behaviour towards your father. But you need to offer up much more than your mother not letting your father play his whistle. After all, the day centre won't let him play it either, presumably because the people there find it very annoying too.

I wish you the best of luck with resolving this situation. It's very difficult for everyone.

Yes I feel you are perhaps right. I obviously havent gone into too much detail as its personal, But in regards the people at the activity centre, they are paid to have his best interests and create or allow space for activities that are in his best interest and that meet his needs. Which for him are playing his penny whistle. If they are annoyed by repetition from dementia patients, they are clearly in the wrong vocation and need to be reported.