Only child, single mum

[VictoriaBlues]

I am an only child by my mother, and she was totally devoted to me all her life (I am 31 now). In the past two years she lost both her parents, developed problems walking a year ago and was finally diagnosed with ALS after a broken foot and hip (replaced) in October. Her only other close relative was her sister, and she had a brain haemorrage a couple of days before mum was due to move to a nursing home close to her (I didn't want her to go to a nursing home). Mum's flat isn't practical at all for someone who can't walk.

The silver lining was that my father had an adapted apartment built for her in his house in January. She has a full time carer for the practical stuff but I am her primary caregiver. She is not in a good way, she can't walk at all or lift her arms and now her hands are starting to go. Whenever there's a change in her condition things are very heavy. She just cries all the time whenever I see her and recently she has started behaving strangely - her memory seems to be impaired, she attacks me with little reason and says off things. I feel like I have been carrying her for the past year and that I am getting worn out, however I've just started getting some time to myself, during which I worry about her, miss her and feel guilty. I split with my boyfriend a couple of weeks ago - our relationship had become all about mum's illness. I'd love to know whether there's anyone else out there in my position - only child to a single mum, and how they cope with this.

Thanks for reading this

 

[VictoriaBlues]

Oh yes, and another thing - in addition to hearing from people in the same position as me, I'd love to hear any advice on how I can best help my mother. I had/have a very successful career, which she didn't want me to give up, so I'm currently working part time from home. I'm finding it really hard to balance the managerial side of this illness (co-ordinating care/pre-empting changing needs/scheduling her diary, friends, therapies, booking things, medical liaison, decision-making, legal etc) with the practical things, the tasks she wants me to do (accounts, writing, bills, internet, typing, legal, administration etc), the tasks we want to do together (collating memories etc), helping with her physio and cooking, getting/giving her treats, in addition to the great deal of time spent giving her emotional support. At the moment the needs are so high that I feel like I'm doing none of them well. Currently others are telling me to try and get a bit of my own life back, which I haven't had for a long time while trying to get everything into place, before the time comes when she's going to need me all of the time. I feel really low but enjoy helping her. Hospice are advising that I need to step back a bit too. I just want to know how I can help her best without ruining myself/making myself ill so I won't be able to help her when she really, really truly needs me the most, and I am terrified about the future.

 

[Jeannie]

Hi~ You sound like an Amazing, devoted daughter. I would agree with the hospice people about maybe taking a little step back to give yourself a bit of time for yourself. Do you have any repite care available to you in addition to hospice? Even an hour or 2 could give you some time.
Get your rest, you are incredibly strong.
In friendship
Jeannie