how do you cope?

[tors]

hey all. my mom has been recently diagnosed with early onset dementia. its been getting worse for a long time but during covid finally manage to get a doctor to check. how do you all cope if its a parent?
I live with her and constantly feel guilty I cant do more to help. Although I now do most of the house work and cooking as well as work.
I just feel bad if I need some time to myself..

 

[Canadian Joanne]

@tors Welcome to Dementia Talking Point. You will find a great deal of support and comfort here, I am certain.

I had a different situation. My mother went into hospital then to a care home. This was after I flew her from her home in British Columbia to mine in Ontario. My original plan was to have her live with me but she had to be sectioned 4 days after arriving in Ontario.
My guilt was about not taking care of her at home.

But you are in a different position. You should look at having time to yourself as being on a plane during an emergency, where you have to put your own oxygen mask on first and then help others. If you don't take care of yourself, it may happen that you won't be able to care for your mother later on if you suffer from burnout.

Is there any possibility you could hire someone to come spend a couple of hours with your mother once or twice a week? I was lucky in that my local Alzheimer's Society had a Friendly Visitor program, in which only vetted individuals were taken on. My mother's Friendly Visitor was a retired psychiatric nurse and was ideal. I realize that the pandemic is making things so difficult now but perhaps there is something you could do. Please do arrange something somehow for yourself. You truly deserve it.

 

[tors]

im so sorry to hear that. I feel scared were gona have to put her in a home at some point but shes getting worse day by day.
I have my step father who helps but he is getting older and cant do as much. although doesnt have dementia.
i could have a look at getting someone in i guess but i no she wont be happy about it. I will have a look online tonight and do some research, thank you for replying.

 

[jennifer1967]

im so sorry to hear that. I feel scared were gona have to put her in a home at some point but shes getting worse day by day.
I have my step father who helps but he is getting older and cant do as much. although doesnt have dementia.
i could have a look at getting someone in i guess but i no she wont be happy about it. I will have a look online tonight and do some research, thank you for replying.

have you had a care assessment and a carer assessment? is there a carer organisation, dementia navigator or admiral nurse in your area? you could ask adult social services whats available

 

[canary]

I think most people with dementia are not happy with having "outsiders" coming in, but I would just go for it. I started off with getting someone in to help with housework.
You need some time off and dont feel guilty about it.

 

[tors]

we have had some sort of assesment yes but because of covid its taking a long time to get to the next part.
i do everything i can to be with her as much as i can but it gets me to every now and again.

 

[Chaplin]

we have had some sort of assesment yes but because of covid its taking a long time to get to the next part.
i do everything i can to be with her as much as i can but it gets me to every now and again.

Hi Tors

Dementia is overwhelming and most of us eventually need outside help to manage the day to day challenges it throws at us. I would follow up with the assessment, sadly if you patiently wait, you will just keep dropping back in the queue. Once this is resolved it should open up other avenues of support, like day care centres where your mum could go once or twice a week. My mum didn’t want to go but she always enjoyed it once there but it gives Carers a short break. I think once you get some extra support in place, the idea of care homes is something for the future. You have to take care of your own physical and mental health so do discuss your concerns with your GP; they can be supportive and sympathetic if you’re lucky. Ask the social worker if your mum can have some respite but try and find somewhere which would appeal to your mum. Does she have any hobbies she enjoyed?
Sadly, we all have to find out what is available in our local area, nobody seems to volunteer much information to family Carers so you might need to push for information, don’t assume those people who you come into contact with will offer up support, unless you make it clear you are finding things tough, the powers that be, will assume you are coping and all’s well. Take care and feel free to offload here as often as you need!

 

[Cazcaz]

hey all. my mom has been recently diagnosed with early onset dementia. its been getting worse for a long time but during covid finally manage to get a doctor to check. how do you all cope if its a parent?
I live with her and constantly feel guilty I cant do more to help. Although I now do most of the house work and cooking as well as work.
I just feel bad if I need some time to myself..

@tors hi. You say you live with your mum? Can I ask how old you are? I live with my mother who has Alzheimer’s, the worry for me is losing the house if dad passes away and mum goes into care. as I am under 60 I might be told to leave so that the house can be sold to pay for her care.
Also are you/your mum getting the benefit(s) you’re entitled to? eg Attendance Allowance. This doesn’t make huge financial difference, but just having something is good both financially and mentally.
Have you got POA sorted too?
Sorry to be purely practical, but being aware of all these things help.
In terms of time to yourself, don’t be too giving. Take what you need. Running yourself into the ground either mentally or physically won’t help anyone.

 

[canary]

Good advice @Cazcaz - its always sensible to get the practical stuff sorted as soon as, however there isnt going to be an issue with the house having to be sold to pay for care as @tors said his step dad lived there too. If there is a spouse living in the home then it is a mandatory disregard.

 

[Cazcaz]

Good advice @Cazcaz - its always sensible to get the practical stuff sorted as soon as, however there isnt going to be an issue with the house having to be sold to pay for care as @tors said his step dad lived there too. If there is a spouse living in the home then it is a mandatory disregard.

Thanks.

sorry, I had missed the second post about step dad. You’re right, while step dad is there it is a mandatory disregard.

 

[Female1952]

@tors hi. You say you live with your mum? Can I ask how old you are? I live with my mother who has Alzheimer’s, the worry for me is losing the house if dad passes away and mum goes into care. as I am under 60 I might be told to leave so that the house can be sold to pay for her care.
Also are you/your mum getting the benefit(s) you’re entitled to? eg Attendance Allowance. This doesn’t make huge financial difference, but just having something is good both financially and mentally.
Have you got POA sorted too?
Sorry to be purely practical, but being aware of all these things help.
In terms of time to yourself, don’t be too giving. Take what you need. Running yourself into the ground either mentally or physically won’t help anyone.

Hi Cazcaz. Sorry you're worrying. If your father leaves his half of the house to you, that wouldn't be deprivation of assets if your mother went into a care home.

 

[Cazcaz]

Hi Cazcaz. Sorry you're worrying. If your father leaves his half of the house to you, that wouldn't be deprivation of assets if your mother went into a care home.

Thank you.

i am hoping dad will agree to do that. Going to talk to him soon about it (Now not great time).

 

[tors]

thank you all for the replies i will get looking into it.