Plan to continue working

This is my first post and would like to hear from anyone who has managed or is managing/trying to continue working despite having a partner who has Lewy Bodies Dementia. I am 11years younger than my husband who is now 62 and retired on Ill health grounds in 2015. He was diagnosed in 2014 with Posterior Cortical Atrophy with Lewy Bodies Dementia and continues to decline steadily. So far he has been okay at home, preparing a cold lunch, taking a walk between 7.30-4.30 each week day but it feels as though this could change at any moment as his poor fine motor skills mean he is struggling to dress, zip his coat or open and shut the back door (has never been able to manage front door since moving house) and his moments of confusion are becoming more frequent. I find working and the routine during the week is helping me cope with the change in our relationship, which is strained during the weekend when we are in each other’s company all the time and his illness dominates everything we try to do, even when with friends. I know everyone’s experience of caring is different but if you have been able to continue working throughout the changes in care required by your partner/spouse I would be interested to hear from you. Thanks

Welcome to the forum.

Others will be along later with similar experiences, but in the mean time I thought I’d check that your husband is now claiming the exemption from Council Tax on the grounds of “severe mental impairment”? This can be backdated to the date of diagnosis of his dementia, not means tested.
Do you have Power of Attorney?
Is he claiming PIP? He may be borderline at the moment.
Please be aware that If he qualifies before he is 65, he would be entitled to Mobility component for the rest of his life. If he claims the day after he is 65, he will never qualify.
You should be aware that your employer should make “reasonable adjustments” for you, as you are now classed as “disabled by association”.

Social Services are supposed to support carers to continue working, so be sure to ask them for a Carers Assessment, so you can talk through what is available in your area.

Hi Allison,

And welcome to the Forum.

My circumstances were slightly different in that I was caring for my mum with mixed dementia but I did continue to work throughout caring for her. It was exhausting in many ways but in retrospect I was glad that I continued to work as it gave me an escape from the dementia and also kept me (slightly) in the “normal” world, with other issues. It was almost my respite. Having said that, it was very very difficult.

  1. I was time poor beyond belief. Use as much of your salary as you can to buy “time”, cleaner, gardener, online shopping, ironing service etc. Anything that reduces the tedious tasks so that you can spend time with your husband without having to worry about that.
  2. For six years I had zero holidays or “time off” that was not occupied with hospital appointments or social services visits. Do not underestimate the effect that has on your health. Beg, steal or borrow any form of respite you can get for your husband to enable you a break too. It is a marathon, not a sprint.
  3. Can you work flexibly? From home occasionally. I frequently worked when mum was asleep, I did conference calls outside hospital wards etc. Every minute counts. Speak to your employer - do they allow carer’s leave? Mine did not. They certainly need to know and be supportive if you are needed suddenly.
  4. Not sure if you have carers coming in at all but that will be needed, I imagine, to make your husband lunch, give you some peace of mind. I also used dementia sitters twice a week booked by Age UK. I had to pay but the peace of mind that gave for a few hours was well worth it.

In short, it can be done but what works today will not necessarily work in a year’s time. If at all possible, I would recommend it. But please don’t underestimate the toll it will take on your health eventually. You will need support from other sources as the dementia worsens. Mum used to wake me up at 2am, 4am etc in “case I was late”.

Good luck, Anne

Thank you for you replies. Yes we already receive the council tax exemption, I have welfare and property Power of Attorney and my husband has been receiving PiP for 3 years but not yet entitled to the higher rate mobility component. This is under review at the moment.
With regards to working, I am the Bursar at a small primary school and it is unlikely that I would be offered flexible working as there is only me in the office and manning reception. However, I have not yet told the Headteacher that I am a carer as he is a very moody character and I have seen the way he has dealt unsympathetically with other members of staff with difficult personal circumstances. It will be a battle. Financially I need to work to secure my future, contribute to a meagre occupational pension (only worked part time when my children were young) and keep me sane and think I may have to be brutal, probably easier said than done, and refuse to assist my husband, who has less than £23,000 in capital and assets to see if that will enable him to receive/access care. So far I have managed to refuse to attend any medical appointments or assessments during term time or during my working hours and the only emergency we have had so far was in 2015 when my husband had a UTI and became delusional but that was the day before we were due to go on holiday and strong antibiotics sorted things overnight. I have just started online shopping and have a cleaner once a fortnight which is improving things but it is the uncertainty which keeps me awake at night not my husband’s illness yet!!
Thank you for sharing your thoughts and experiences

Allison, it sounds like you are doing all you can - but given your job you are clearly very capable and should hang onto the job which I’m sure you love.
As your husband is so much older than you, it’s almost inevitable that you will spend some time as a widow (my own husband died at just 58) and it is vital that you secure your own financial future as much as you can, especially with the rise in retirement age.
As he has under £23,000 he should get some financial assistance from Social Services should he need any care at home. Has he had a Needs Assessment, and you a Carers Assessment, in the last year?