Hi Suzanne , Thank you for doing this. I did get to a certain point & got interrupted. I would like to Thank Mobilise for your emails & advice. Helping to keep our sanity. My dad has Vascular Parkinsonism & I've been caring for him even before his diagnosis due to helping him with my mum who had Lewybodies dementia. I have cried , got angry , sad felt some days out of my control. Can't believe both parents struck with brain disorders that have a major impact on all our lives. The main thing that shocked me as main carer was feeling lonely. I have my daughter back at home from Uni , I have a partner who doesn't live with us but is there for me at the end of a phone. I have carers help dad with personal care as it needs a double up I can no longer move him safely. I have a lady who sits with dad while I have respite & chat to her. But regardless of all the interactions I still feel very lonely. My dad has swallowing issues & feed with risk he didn't want a peg so I've self taught blending foods & finding foods & he's on Nutricreme daily. Noone I know does this or can do this around me. So I feel alone it really can be scary if dad chokes. I did have advice from SALT speech & language therapy but they gave up when he was feed at risk. So I've successfully kept him alive since he left hospital last October. Some days are very difficult. Seeing your dad change from being able bodied & mentally self stimulated to bedbound, virtually paraplegic & non cognitive is a shock in itself. You get used to the new norm but the memories are sad knowing of what he used to do. I therefore hit anticipatory grief. So I am grateful for your check-ins, advice & just knowing other people are out there being main carers & the emotions & hurdles we face are in fact normal in the care giving world ❤
Hi Suzanne , Thank you for doing this. I did get to a certain point & got interrupted. I would like to Thank Mobilise for your emails & advice. Helping to keep our sanity. My dad has Vascular Parkinsonism & I've been caring for him even before his diagnosis due to helping him with my mum who had Lewybodies dementia. I have cried , got angry , sad felt some days out of my control. Can't believe both parents struck with brain disorders that have a major impact on all our lives. The main thing that shocked me as main carer was feeling lonely. I have my daughter back at home from Uni , I have a partner who doesn't live with us but is there for me at the end of a phone. I have carers help dad with personal care as it needs a double up I can no longer move him safely. I have a lady who sits with dad while I have respite & chat to her. But regardless of all the interactions I still feel very lonely. My dad has swallowing issues & feed with risk he didn't want a peg so I've self taught blending foods & finding foods & he's on Nutricreme daily. Noone I know does this or can do this around me. So I feel alone it really can be scary if dad chokes. I did have advice from SALT speech & language therapy but they gave up when he was feed at risk. So I've successfully kept him alive since he left hospital last October. Some days are very difficult. Seeing your dad change from being able bodied & mentally self stimulated to bedbound, virtually paraplegic & non cognitive is a shock in itself. You get used to the new norm but the memories are sad knowing of what he used to do. I therefore hit anticipatory grief. So I am grateful for your check-ins, advice & just knowing other people are out there being main carers & the emotions & hurdles we face are in fact normal in the care giving world ❤
Promo*SM