Hello - balancing care and work

[AdeleF]

This forum was recommended to me by a friend who has been through the same experience, she said it helped such a lot to be able to talk to people who had had similar experiences.
Dad is 90, diabetic and has vascular dementia. Mum (87) did an amazing job caring for him at home until three weeks ago when he stopped eating because he could not swallow, he had delirium, and he was shouting 24 hours a day. He was admitted to hospital and treated for chest and urinary infections.
The consultant told us on Thursday that there's nothing more that can be done for Dad, which was not a surprise, and he recommended a continuing assessment fast-track pathway for palliative/end of life care. Before this week I wouldn't have even known what that meant - you certainly have to listen carefully and learn fast!
We agreed on residential care and are waiting for an update.
I still work, and my parents live in a village an hour's drive from me. Mum doesn't drive and is relying on me to take her hospital visiting, a round trip for me of 3.5 hours driving which I have to fit in with work, so we have only been going three times a week. I anticipate the residential care will be a similar distance. I'm sure she will want to go more often now, understandably, but the only way I can see myself being able to do this is to give up work. It just seems such a drastic step. Has anyone else found themselves in this situation?

 

[SAP]

Hello @AdeleF . Your family certainly have been through the mill recently. Your mum has done a grand job by the sounds of things.
I think when the residential placement is found, you are going to have to have an honest conversation with your mum about what you can manage and about what your dad will need. The sad reality is that your dad probably won’t know you have been or remember that your mum has visited. He won’t be looking at his watch wondering where you both are. You , however will get more and more exhausted by the tooing and frowing and that won’t be good for your health. If you gave up work, what would you do for money? What would happen once your dad passes away? Can you afford this now and its impact on your future?
Also just a note to remember but spaces in residential homes are few and far between for the kind of care your dad will need and he may well be quite some way from the local area, this is something you may need to prepare your mum for.

 

[Gosling]

Hello @AdeleF and welcome to this friendly and supportive forum from me also. There is a lot of shared experience of dementia to be found here, so I am glad you have found us.
I am sorry to read about your Dad, and the situation you and your Mum are now faced with. It is a very hard decision to make about your work. As @SAP above had said, do think about all the things they have mentioned.
I did give up work to be better placed to care for Mum once she was diagnosed but still able to live in her own place. I was in my late 50's at the time, and worked out that I could manage financially, even if it was going to be difficult. In the end, she had to go into residential care for her own 24 hour care and safety. But I don't regret giving up work for a minute.
But you are in a different position, in that your Dad is going into residential care. You essentially would be giving up work to provide taxi for your Mum, and you, to visit your Dad. For how long? If he is going to be put on palliative/end of life care, then what happens after he passes. Lots to think about please before you make any decision.
I hope you will find this forum useful for information, and any particular advice if you need it, do just ask, as members here really do want to help.
It's also good for letting off a bit of steam when you need to!

 

[sdmhred]

Hi @AdeleF
I‘m sorry to hear of your situation. It must be very difficult to have your Dad so far away.
Im wondering whether you might be able to take a career break or some unpaid leave rather than leave your job? That might give you some headspace to concentrate on your parents and take some time to consider the options alongside your Dads diagnosis.
take care

 

[Cookie1]

I use volunteer drivers from a local charity to take my hubby to daycentre etc but they take anyone who needs transport you just pay a pound booking fee and 45p a mile. Check to see if there is anything like that about x

 

[AdeleF]

Thank you @SAP, @Gosling, @sdmhred and @Cookie1 for your comments and suggestions. I am going to wait a while to see where Dad is placed and give it some more thought. I enjoy my work (in IT) and have found that the focus and concentration needed in my job gives me a break from worrying about my parents - almost like mindfulness!! So there's something to be said for sticking with it if I can.

 

[sdmhred]

I’m the same @AdeleF
Work is the one place where I’m not thinking about mum. i have managed to sustain 3 days per week and it has been the one thing for myself (and my finances!)…..but I have used unpaid leave when doing both would have either been impossible or driven me over the edge

 

[AdeleF]

As an update to my posts at the beginning of December, Dan sadly passed away just before Christmas. He was still in hospital and had been due to transfer to end of life care the next day. At least he has peace now.
We asked for donations to the Alzheimer's Society instead of funeral flowers as we appreciated the information and support available we received AS.

 

[Sarasa]

Sorry to hear about your dad @AdeleF , but glad he is now at peace.