This year I kept a journal (most of the time!) of mum’s dementia journey. I wanted to remember the good and also learn from when times were hard. Reading it back makes me realise how much has changed in just one year.
Limited mobility but more freedom
Mum started this year being able to stand but not walk. She has forgotten how to walk and is always terrified of falling. We worked hard with the physio to try to get mum to move but with no progress, she stopped coming after just 4 sessions and I was left with an exercise sheet to help maintain her strength. I know my mum she doesn’t really listen to me with exercise, she really tries (albeit for about 5mins) but then gives up. If I try to persevere then mum will happily tell me to piss off many times a day in multiple languages. Luckily, we found a wonderful spinal injury physiotherapy clinic locally, and we have been privately funding physio sessions for mum since then. Without it, she would have become much weaker than she is now.
Over the next months, mum struggles to support her weight so that it’s unsafe to use the patient turner. Doctors believe that the spinal compression has got worse and causing this weakness in her legs. We have no choice but to move to one-floor living. We asked for a hospital bed but are refused by the district nurses because mum doesn’t have pressure sores, even though it’s clear I can’t physically support mum out of bed any more. We spent most of the first half of the year living in her bedroom. Thank god for our wonderful Occupational Therapist (OT) who arranged equipment like the Steadi to help. After months of being cooped up, we bought a hospital bed ourselves. This was the best decision we made as we could move the bed to allow me to change mum comfortably without breaking my back and also allowed us now to move downstairs. The OT provided a wheelchair which opened up mum’s world again. We could safely transfer mum to a wheelchair taxi or to just take a walk outside or just going shopping together again as we used to without fear of injury through falls. So whilst her physical mobility is limited moving to a wheelchair has actually brought us more freedom. Our private physio has been amazing for mum, her specialist spinal knowledge resulted in mum getting referred to a spinal unit in Cardiff, and kept mum from deteriorating further before her operation and our OT has been there from the start and always had a solution to whatever problem we encountered.
Yep, we did manage to have some, our best day was mum getting through major spinal surgery that could have left her paralysed or worse. It was the most terrifying experience for both mum and the family but we couldn’t have done it without the support of our hospital and their lead dementia specialist. We contacted them before mum’s op and they made sure all staff were fully trained, got as much personal information from us about mum, who she is as a person, likes & dislikes etc. The doctors and nurses always spoke to mum, not over her, and they ensured that she had a dedicated nurse with her after her operation. They were gentle and kind, moved her into a separate room and allowed family members to be there 24/7 to reassure mum at all times. It was THE best hospital experience ever.
Mum also celebrated her 75th birthday, we had such a fantastic day all her family came to visit including her grandchildren throughout the day. Mum was in her element surrounded by good company, laughing, eating cake and choccies as everyone sat on the floor or the bed in her tiny bedroom. They took it in shifts to go upstairs and visit with mum because it was such a tight squeeze in there. I will cherish that day. She was giddy but exhausted after it.
There are many smaller moments to celebrate from mum recognising who I am, or having a giggle playing balloon badminton, mum finally accepting a care package to starting to sleep through the night again!
Caring for someone with Alzheimer’s is of course not easy from the frequent mood swings, anxiety and stress of not recognising your own home to just general apathy & disinterest in doing anything.
Having some kind of support network is crucial. If you’re anything like me you prefer to keep it private, and that’s where social media comes in. You can ask for help from the twitter community or join in chats like #Alzchat or #Diversealz or just follow along for great tips and advice from fellow carers or those living with dementia. If it wasn’t for reaching out to them, mum wouldn’t have had the care she did in hospital, I would never have thought to reach out beforehand to their dementia lead specialist ( I would encourage anyone going into hospital for a stay to do so, the lady who helped us explained that the service was available to everyone you just need to ask or let them know before arrival)
I’m grateful for the support that I have from social media which has helped me too many times to count. Where I’m crying my eyes our or ready to pull my hair out, social media has always been there to give me advice. I’m not perfect, I’ve lost it a few times, where I wanted to give up or shouted at mum through sheer frustration regretting it instantly. Social media gave me an outlet and helped with things like how to keep mum occupied with games, how to deal with UTI’s, incontinence, severe nappy rash, dealing with apathy and most importantly to always put things into perspective and keep the focus on mum, her dignity and alway to try to be respectful. They were there when mum’s recovery was delayed due to developing pressure sores (horrible) and unknowingly there when she almost died from a pulmonary embolism. I will continue to draw on that and I can’t thank my twitter friends enough for their support.
So this year mum has been through a lot, but she has come through it with her Alzheimers only slightly worsened post-surgery. I’ve tried to educate myself more about the disease to help and support mum through this process. My heart breaks that every night she’s always in some form of distress, wanting to go home or can’t be left alone.
I know my own health has suffered, but thank goodness mum has accepted having carers in the home. Our social worker put in a care package so now I have home support with carers coming in every day and I finally get a respite day for myself from family. I resolve to make time to take better care of myself this year If you find it hard to accept help and think you can do it alone, take a moment and really reflect My advice for anyone caring take all the support that is offered to you, search out carer’s forums and social media for what is available to you, as it has made such a difference to me.
Goodbye 2019. Happy new year.