I will start this post by saying that my mum died suddenly and unexpectedly last week, she was 77 with no diagnosis of anything, and I am still in absolute shock about what has happened. But this post is very relevant to me.
My mum had been plagued by depression and anxiety all of her adult life. About 5 years ago and following a knee replacement, everything seemed to take a downwards turn. My mum was divorced and lived alone. I live one minute from my mum with my husband and two school age children. I have two jobs. My brothers and their families both live 45 mins away. Everything to do with mum was in my lap. I won't go into the whole story, but over the course of 5 years I took my mum to SO many doctors about her mood (none of the depression meds seemed to work anymore) and memory initially. We got fobbed off at every turn. Following a collapse at home 18 months ago mum was eventually referred to the memory clinic and discharged with a care package, because her mobiltlity had also deteriorated. Since then things went from bad to worse. Still I was practically begging the doctors to please diagnose mum with something so she could be helped. They were absolutely useless every step of the way. Referrals weren't made, appts weren't kept, I could go on... Along with having to worry about providing the care, getting a diagnosis of anything is 90% of the problem.
In a nutshell, the last 4 months of mums life were so sad. She was frustrated, I was frustrated. The carers did the basic care, washing, dressing and meals, but I did everything else. Appointments, shopping, toileting and personal care in between carers visits, admin, phone calls, trips to a&e after falls, calls in the night for the loo or she just needed me for something. Mum became very needy. Sometimes it could be difficult to reason with her about certain things, but I didn't want to take all of her decisions away from her. It had got to the point where mum couldn't get up without falling over so she was really bound to her chair unless someone was there.
She had moved downstairs. It was unrealistic for mum to live with us as I fully expected her to live to 90 like my nan did, and my family just couldn't put our lives competely on hold indefinitely. She did not want to go into a care home, so I felt like I couldn't do that to her.
I took every problem off her plate, but her anxiety created small ones that were so silly, and often frustrating. I was so worried about what the future held. I honestly didn't know what the next 6 months would have entailed. My mum became so, so frail before my eyes. My mum wasn't safe to be at home but adamantly didnt want to be anywhere else. It was so hard. I got to the point where I was scared to go anywhere in case she called, I dreaded a phone call saying she'd fallen again.
Other people visited, but everyone decision was down to me, and every commitment I made revolved around my mum more recently. I didn't resent it, my mum was an amazing person and a wonderful mum, she loved me unconditionally, and I loved her so much too, but it was so hard to juggle everything and not to completely abandon my family to tend to mum. It was hard not to get frustrated, it was sometimes hard to do things I didn't want to be doing with a smile on my face. And now I feel so terribly guilty for everytime she knew I was huffing and puffing about something.
I was petrified everytime I left her at home alone. One month ago the memory clinic decided she probably had Parkinson's. She was due to go for a scan on the day she died. We never got there. Mum died with me holding her hand after me performing CPR until an ambulance arrived. She died because of a massive blood clot in her lungs. No symptoms so undiagnosed.
My life is competely upside down now. She should have been given help such a long time ago. It's all so sad and frustrating. All of this needs to be taken into consideration if you are having conversations with people about proving care in their later life... until you have provided this kind of care and taken on this level of responsibility, you have absolutely no idea how difficult, hard to juggle and mentally draining it can be :(