How will my own life fit around Dm's appointments?

[boxyfingo]

Hello all! I am new to Elderly parents but now in a situation where I could do with some advice.
DM is 88 and is at the stage where every month or so she seems to have either a new health issue or a flare-up of an existing condition. This means that she has more and more appointments to attend and as her only child and carer I have been taking her to all of them. I do all the organising and sit in with her as she now has virtually no hearing as well as having low cognitive impairment.
I just wonder how other people in this situation cope. I was working but had to give it up last year as she needed me so much. I would dearly love to work, even part-time but am struggling to be able to commit myself to a job whilst I am her carer. There are weeks when she could manage at home without too much help but there are other weeks when it feels relentless. I hate the unpredictability of the situation but really don't know what to do. Any ideas greatly appreciated!

Hi boxy. It sounds like you have a lot on. Does your dm have attendance allowance? Non means tested and worth 50 quid plus per week.
Do you have a local carers association? They can provide advice and support. Would it be worth exploring help from a care agency? Some are very good and could help with some of the routine stuff.
How are you looking after yourself?
Also, do you have poa in place? Do look after yourself- would volunteering fill the work shaped hole? Lots of flexible opportunities via do-it website to help you feel human again. Good luck.

Thanks for the advice. I haven't sorted out attendance allowance or poa yet but it is now becoming clear that I do need to do. In the past there have been health scares and problems that I would consider to be one-offs, but over the past year her health issues are much more frequent and so I suppose I am realising that this is how things are going to be for now on. I feel like I am just finding my feet and having to learn as I go along!
I haven't been sure about carers as the household stuff isn't really a problem - DM can be left alone, can wash and dress and prepare simple meals. For me the problem is the large number of appointments that she has and the fact that somebody needs to take her, listen for her and speak on her behalf. It is hard enough for me and I know her! Do you know if carers provide this sort of service? I would go back to work if I could find the solution.

Have you tried Age UK or the WRVS, they offer befriending services and may be able to help with hospital appointments. You could also have a look to see if their is a local advocacy service.

Thanks Wormery, I will have a look into what you have suggested.

Second the POA and Attendence Allowance. Try to get someone to help you with the latter as you need to know how to word things, plus it can be difficult to emphasise your mother's incapacity rather than her capacity. (Note she will need to sign, again difficult.)

You might try the hospital volunteers group if there is one. They may well be aware of support. Or perhaps her parish if she is a church goer. You could try care agencies, they will do all sorts of things incvluding emergency overnight stays, but make sure you meet the person first. I am not sure that some of the carers we met would be that useful, though others would.

Thinking a bit further, but the best thing you could do is find someone sensible and nice, who might be paid as a cleaner, but provide a bit of company, and who has sufficient flexibility to be able to stand in for you at, say, follow up appointments. It is a great release not to have to do it all.

Thanks Needmoresleep, that's useful advice. We had carers after DM had a stroke a few years ago, just for washing and dressing. Although they were pleasant and efficient I don't think they would have been suitable for what I want now. I will look into what you have recommended. I hope I find a good match for the job!

Maybe it’s time to start thinking for future? Either a care package in her own home (which you may have to be a pest to get) or supported accommodation which means there are carers on hand. My ex mil resisted the latter but her social life shot up after being persuaded for eg.

You can’t do it all alone, it’s time to sort out the resource available and get some help.

I regularly rave about very sheltered housing, ie with night warden. It changed my life. I am no longer the first point of contact in an emergency. Plus DM is far happier (she has been there five years). Losing some independence actually gave her more as she can make the most of her remaining capacity.

Thanks Gamerchick. The issue that I haven't already mentioned is that we live in the same house (joint ownership) which I think adds to the complication. I am so close at hand that I seem to have fallen into the role of carer and general organiser/driver/spokesperson etc. I agree that supported accommodation might be a good idea for both of us, but DM does not seem keen and I can't really force her out of her own home. When I approach the subject she obviously doesn't want to face it and says things like "Well I will be dead soon"...this has been going on for 15 years or so . I think health circumstances may dictate a change of living arrangements at some point but when that would be I can't say. I feel like I am in limbo, always on standby for the next health concern and all the arrangements that leads to.
I think I am feeling a bit sorry for myself and don't have any family left to share my concerns with (apart from my teenage DCs who I don't want to worry).

Hi OP, when I did this I worked 12hrs pt in a job which ment my hours were different every week. This was perfect as shifts were easily swapped and I only worked 3 days max 4hrs a day. Not sure if there's anything like this near you? Or perhaps a Sunday job?

Hi Fivenights. Yes this is what I am considering. My previous job had very set hours and I had a responsibility which meant I had to be there. It become impossible when DM started needing me at random times when I also had to be at work. Unfortunately my previous training is for a job which doesn't allow flexibility so I need to try something new that will give me some free time on weekdays.

I second looking for part time work which would let you accompany your DM to appointments. I have had appointments for both DM and DF. I work 3 set days per week so if an appointment comes through on my work day I ring and ask them to change it to a day when I am available.

The other thing I have found is that recently as my parents health has deteriorated we have had health professionals (GP, nurse, memory nurse and psychiatrist, eye and foot care) all visiting my parents in their own home.