Hi all. After a couple of Covid affected years in which my mom's symptoms were examined in isolation (sometimes up to six months in between consultations and tests) she was finally given a MND diagnosis in January 2022. It was a shock, as we hadn't thought of the condition. However, looking back at what was happening to her and what we know now, the clues were there.
Mom went home after hospital. Her condition is deteriorating rapidly now. Whilst there are lots of different teams and services involved, MND nurses, OT, Physiotherapists, Diet & Nutrition, District Nurses, speech and language (to name but a few) I have found that i have been left to constantly co-ordinate calls and help for mom, sometimes even between the support services themselves. They do have a tendency to work in isolation and independent of each other. It has been frustrating. We don't have a social worker as they left us when they established that mom was a self funder for her home care. Does anybody else share my frustrations? I have a full time job, and feel.as if I have got an additional one planning and chasing up the help for mom.....as wonderful as it is!!
Mom went home after hospital. Her condition is deteriorating rapidly now. Whilst there are lots of different teams and services involved, MND nurses, OT, Physiotherapists, Diet & Nutrition, District Nurses, speech and language (to name but a few) I have found that i have been left to constantly co-ordinate calls and help for mom, sometimes even between the support services themselves. They do have a tendency to work in isolation and independent of each other. It has been frustrating. We don't have a social worker as they left us when they established that mom was a self funder for her home care. Does anybody else share my frustrations? I have a full time job, and feel.as if I have got an additional one planning and chasing up the help for mom.....as wonderful as it is!!
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