Most people who care for someone with dementia will tell you that there are periods of deterioration followed by plateaus where the disease seems to pause to catch it’s breath before destroying another valuable part of the cerebral cortex. These dips and plateaus vary and the period of stability for one person may last years whereas another will seem to move on to further deterioration in a matter of days. We were told when mum had her formal diagnosis that the rate of decline in Alzheimer’s is fairly consistent and the disease follows a similar trajectory, so that a person who has deteriorated rapidly is likely to continue at a similar pace and someone who has gradually lost function over years will probably decline more slowly. The punchline of the whole ‘revealing the diagnosis’ chat with the specialist nurse came when she said “In a couple of years, when she’s in residential care…’ I left that consultation prepared for the fact that mum could be in a home by the age of 65.
Mum is now 66 and I would say we are doing quite well but this is a term one uses advisedly in Alzheimer’s – my version of ‘quite well for a lady of 66 years of age’ is not going to be the same as yours. The single factor keeping my mum out of residential care is my dad. He is the lynchpin of the entire construction and if he were even slightly incapacitated the whole house of cards would fall down (excuse the mixing of metaphors but you get the picture). Mum is still able to be left on her own for short periods of time although I have felt increasingly anxious about leaving her alone in my house even for a few minutes (a dilemma nobody wants to have – do you lock your mother in the house to stop her wandering knowing that you are also preventing her escape in the event of a fire? – on balance fire seems less likely than wandering but I would still feel like a prison guard as the key turned in the lock). We had, up until recently, been managing the occasional night with mum on her own at home – we had a plan whereby my sister or I would drop mum off at home on a Sunday evening, Alison the carer would pop in for an hour or two later the same night and get mum into bed and dad would be home Monday morning. This worked well for music festivals or rugby tours where my sister and I were happy to have mum for the majority of the weekend but struggled to cope with Monday morning, getting to work and taking kids to school with mum in tow. However, as this year’s festival season approaches it seems by unspoken mutual consent that this is no longer possible.
The last time I went to pick mum up on a sunny Saturday morning she had already been on her own in the house for a couple of hours (dad had got her up and dressed and then left early. I pulled up on the drive and noticed that the front door was open. Initial panic gave way to relief as I saw her pottering about inside the house and realised that she wasn’t shuffling along in her slippers half way down the dual carriageway. I got her into the car with the kids and did a quick sweep of the house to make sure the cat was out and the windows were shut. In the kitchen I spotted a full cup of tea on the side which I moved to the sink to empty. As I did so I noticed an open bottle of Baileys (other delicious cream liqueurs are available but let’s face it, they’re not the same) on the counter next to the kettle. I looked more closely at the mug – tea it was not. Instead, a mug full of Baileys with a few coffee granules floating on top. It had barely been drunk and I suspect that mum had simply fancied a liqueur coffee (at ten in the morning – but if I had dementia I’d see that as a reasonable perk) and got a little confused as to how to construct the beverage. She’d then either tasted it and realised it wan’t right or simply wandered off and forgotten about it. Either way, no harm done, but if she had managed to slurp her way through the entire mug she’d have been absolutely hammered.
Although the episode made me smile and we went on to have a lovely weekend, it did cross my mind that there had been two potential ‘near-misses’ in the space of a couple of hours at home alone. It seems pure good fortune that mum hadn’t wandered straight through the front door and under a car or drunk herself into a coma during that short period of solitude. Added to that the fact that she is now entirely unable to communicate beyond single words, hand gestures and pouting – if she wandered and was found it would be almost impossible for a stranger to get her to safety. So, aside from needing a medic-alert bracelet (writing this has reminded me we MUST get one) there are now genuine safety concerns starting to emerge and steps that have to be considered.
- Are we at the point where we need more care? – Yes
- Could dad cope with being stuck at home 24/7 with only his demented wife for company? – No
- Could my sister and I take on more of the burden? – Yes, but at significant detriment to our own household harmony, children’s wellbeing and careers
- Could we afford more privately funded carer hours? – Yes, but only a little. When we first looked into getting someone like Alison to live-in for a week it cost around the same as a fortnight in the Maldives. I have no problem at all with good renumeration for care staff. Alison is a godsend and mum adores her but we cannot afford her residential equivalent
The other big issue is boredom. When mum’s sister from Canada came to stay last year she surprised us all by suggesting that mum might be happier in a care home where she had company all the time. She had a point although I don’t think any of us were seriously considering carting her off there and then. Mum is left on her own for periods of a few hours at a time and although she seems content to stare at the walls or watch whatever dross is on the telly there is no question that she is more animated when surrounded by people, at her singing group, sat in the kitchen while the kids run round or I chat to my friends over coffee. She doesn’t contribute but she seems to enjoy the hubbub.
The conclusion we came to was that we should at least start investigating day-care – ideally somewhere that provided activities for younger people with dementia that could ease seamlessly into the occasional overnight stay and then longer periods of respite as needed. What we hadn’t banked on was the lack of such a venue to cater for our specific needs and the deeply ingrained horror of all things ‘care home’ that mum has held onto despite losing most of her other key faculties and prejudices. Cue a massive disaster…….