Dementia Champions?

[Kitten71]

Hello, does anyone happen to know if the Dementia Champions training involves explaining how the family members may be feeling and what support might be appropriate to offer them?
Dad is currently in the late stages of his dementia and I’m finding it a difficult time. It’s a stressful waiting game which could go on for a very long time or could be over tomorrow. After having a rant on a forum at work as I don’t get a lunch break and I need time to mentally reset rather than slogging away for 8 hours a day non stop, my boss told me I didn’t need to do that as she knew all about dementia and I should’ve gone to her for help (I already had on multiple occasions). She proudly proceeded to tell me the bookcase analogy about Alzheimer’s which I dutifully listened to and then said ‘Dad doesn’t have Alzheimer’s, he has a different type of dementia which has completely different symptoms’. I explained I was grieving for someone who is still alive and I realised she had no concept of what I’m feeling. I think all employers should be made aware of the difficulties a family can face when they have a loved one with dementia. I want to be at work but they don’t seem able or willing to give me the support I need. Has anyone else found this to be an issue? If so, how was it resolved?

 

[Grannie G]

Hello @Kitten71

It`s hard to make anyone who hasn`t experienced dementia understand the impact on the family and sadly for some people, a little knowledge is a dangerous thing.

There are dementia services and support groups in your area. Find out what's available where you are and you should be able to find out more about Dementia Friends and Dementia Champions.

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

https://www.alzheimers.org.uk/get-involved/dementia-friendly-communities

 

[Kitten71]

Hello @Kitten71

It`s hard to make anyone who hasn`t experienced dementia understand the impact on the family and sadly for some people, a little knowledge is a dangerous thing.

There are dementia services and support groups in your area. Find out what's available where you are and you should be able to find out more about Dementia Friends and Dementia Champions.

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

https://www.alzheimers.org.uk/get-involved/dementia-friendly-communities

Thank you.
I just wish there was more stuff available to help others understand what a family may be going through in order to provide a suitable level of support, in particular for employers to be able to do this. They are so lacking in my workplace and it’s not helped that I work for a global company who only have pound signs in their eyes. My options seem to be to muddle on at work and hope I don’t make a huge mistake or to be off sick. There is no in between as far as I can see. Asking for help, as I have done, seems to have thrown them into a complete spin! Maybe a summer relaxing in my garden wouldn’t be such a bad thing.......

 

[Grannie G]

I`m afraid it`s still the luck of the draw.

When my mother was at home with dementia my boss was very understanding , maybe because she had a sister who needed 24/7 care so knew how it was.

My son was also shown understanding when I needed help with his dad. He works for a big pharmaceutical company which also sees pound signs in their eyes but my son was allowed some time out when we were really in need.

Have you spoken with personnel at your work place and explained the situation? [ Are they called HR now? ]

 

[Kitten71]

I`m afraid it`s still the luck of the draw.

When my mother was at home with dementia my boss was very understanding , maybe because she had a sister who needed 24/7 care so knew how it was.

My son was also shown understanding when I needed help with his dad. He works for a big pharmaceutical company which also sees pound signs in their eyes but my son was allowed some time out when we were really in need.

Have you spoken with personnel at your work place and explained the situation? [ Are they called HR now? ]

I went to my manager and said I was struggling to cope as overnight I became responsible for two trainees and I just couldn’t deal with all the pressure of that as well as the stuff I have to deal with at home. Dad is in his 8th year of dementia now and as we all know, an infection can strike at any point or a crisis can happen and that waiting game is a tough one to play. He is in a care home but that doesn’t mean my emotions switch off even if the physical act of caring for him does.
Back to my boss. After admitting the strain was getting to me, she just replied ‘it’s a nice day and you’re on annual leave soon’, so in other words, just get on with it. A few weeks later I approached another manager and asked her for help which was more forthcoming. She advised her team leader who rang me and said I should’ve gone to the top dog in the first place!! Surely it should only take one conversation with my own line manager to get some help in motion?!? In between all the phone calls, I also posted on an in house forum about how unsupported I felt, so now I’m in trouble about that too!
Anyway, I am now in the situation of having had two solutions offered to me, neither of which are suitable so tomorrow I have to go and tell her that. As if I don’t feel stressed enough with Dad and his illness, now I have all this at work too. I’m just beginning to wish I’d been signed off sick to reset myself and gone back when I felt more able to cope.
Poor Dad was so poorly at Christmas. The doctor came and asked us if we had our final wishes in place and we all prepared for the worst but then he bounced back and I think I’ve just started to come down from the adrenaline rush which has led to these feelings of not being able to cope. Now I feel on edge in case we have another emergency. We’ve had plenty in the past and there’s always that nagging feeling that the next emergency will be the last. It’s such a bumpy rollercoaster. I just wish I could stay indoors in my little home where everything is safe forever more!
Sorry for the rant, I could seriously think I’m losing the plot x

 

[Prudence9]

@Kitten71 so sorry you are feeling so unsupported at work, very shortsighted of them but not uncommon I'm afraid..
I wondered if speaking to these organisations would advise and assist you in making a case for "Family Friendly" leave or a "Reasonable Adjustment" to your working hours/place of work (eg from home), in order to help you cope and for them to retain a valuable member of staff?

http://m.acas.org.uk/
(Will advise employers and employees on your rights in the workplace)

https://www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/
Admiral Nurse national helpline, can provide you with invaluable emotional support.

https://www.alzheimers.org.uk/

Does your employer have an Employee Assistance Provider (EAP)?
If so they can very often provide free counselling sessions and legal advice etc.
Is there an easily accessible Occupational Health provider you could be referred to via your Line Manager?
They can only ever recommend alterations to your working contract but are good to have "onside" if you need medical backup for yourself and your situation.

Failing all of that, go to your GP, take some time off sick, you sound like you really do need a break.
Very best of luck xxx

 

[Kitten71]

@Kitten71 so sorry you are feeling so unsupported at work, very shortsighted of them but not uncommon I'm afraid..
I wondered if speaking to these organisations would advise and assist you in making a case for "Family Friendly" leave or a "Reasonable Adjustment" to your working hours/place of work (eg from home), in order to help you cope and for them to retain a valuable member of staff?

http://m.acas.org.uk/
(Will advise employers and employees on your rights in the workplace)

https://www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/
Admiral Nurse national helpline, can provide you with invaluable emotional support.

https://www.alzheimers.org.uk/

Does your employer have an Employee Assistance Provider (EAP)?
If so they can very often provide free counselling sessions and legal advice etc.
Is there an easily accessible Occupational Health provider you could be referred to via your Line Manager?
They can only ever recommend alterations to your working contract but are good to have "onside" if you need medical backup for yourself and your situation.

Failing all of that, go to your GP, take some time off sick, you sound like you really do need a break.
Very best of luck xxx

Oh wow! That ACAS website is fantastic! Thank you so much for signposting me that way. When I read about what the ideal manager looks like, mine are a world away from that!
I do have a phone number for our EAP but I haven’t called them yet. It’s a ridiculous thing, but the thought of picking up the phone and talking to them fills me with anxiety too.
I think I’m going to spend the evening on the websites you’ve highlighted. Knowledge is power and I feel empowered to go into work and know I’m right to ask for help. As the advice says, a supported employee is more reliable, loyal and less likely to be off sick. It really should be so simple for employers to keep their staff happy but so many companies run on the bare minimum amount of staff that there is no time to address issues or provide cover when staff need a bit of time out.
Thank you again. These websites are invaluable xx

 

[Prudence9]

Oh @Kitten71 you've made my night! I'm so glad I could help a little, hope they're all of some use.

I used to work in Occ. Health and we used an EAP - don't be nervous of the service if you decide to try it (it may not suit you), confidentiality is paramount so your employers are usually not told who has used the service, just how many people have done and in which areas, you can always check this with them when you first call.

Try the other two first, they'll build your confidence.

Please let us know how you get on - and sleep well tonight. Xxx

 

[Kitten71]

Oh @Kitten71 you've made my night! I'm so glad I could help a little, hope they're all of some use.

I used to work in Occ. Health and we used an EAP - don't be nervous of the service if you decide to try it (it may not suit you), confidentiality is paramount so your employers are usually not told who has used the service, just how many people have done and in which areas, you can always check this with them when you first call.

Try the other two first, they'll build your confidence.

Please let us know how you get on - and sleep well tonight. Xxx

Thank you for making my night too. I have ammunition to arm myself with now when I’m speaking to my bosses.
I’ll try my best to sleep well tonight. Fingers crossed my anxiety doesn’t make an appearance in the early hours. Maybe it can wait until tomorrow morning