Next stage –the Most Difficult Stage Arranging Respite and Care

We soon noticed more signs that Pat’s disease was progressing. This was when we realised this really is something that will affect the whole family in ways never imagined.

My husband Greg is a solicitor, I run my own business, our girls are at school and 6th form, Vic is looking forward to a retirement with his wife…..Dementia is a curve ball that comes out of nowhere and changes the status quo.

dementia tips from our family

It soon became evident that Vic could not cope on his own and by now various agencies were involved as referred by the doctors. This was the hardest stage because Pat still had some awareness of what was happening, and it broke our hearts when eventually we had to arrange, as recommended by the care team and the doctors, for Pat to go away for a few days; leaving her in that first home was to be the hardest thing we have ever had to do, and we cried all the way home.

When we visited the next day, however, she seemed happy and had been helping the other residents, nurturing them and keeping busy! Like a child at nursery, it seemed that once we were out of sight she was ok!

Greg managed to organise 1 day a week respite to give Vic a break and he also attended a course to help him cope. The respite soon increased to 2 days. On these days Greg often had to call his mum in the morning with a cheerful “It’s your special day out today mum, are you getting ready?”  Despite being adamant she didn’t want to go, with Greg’s gentle encouragement she almost bounced out of the door – she would always listen to Greg!

 

Vic was increasingly struggling to cope, sometime having dark thoughts because no two days were the same. He was doing all of the housework, cooking and cleaning whilst still trying to come to terms with the disease and what it would mean to himself. No retirement with his lovely wife. He was calling me or Greg every day in tears and sometimes I would be able to hear Pat screaming and swearing in the background – she was so scared and frustrated and he didn’t know how to deal with what was happening, the situation was getting really desperate.

In addition to the 2 respite days away from home we organised daily visits from the carer; the daily carer was to help Pat with personal hygiene (she wouldn’t let Vic help and I couldn’t do it daily) but the carer was not the same person and sometimes she would take a dislike to the person who arrived.

Pat was such a proud lady and always looked lovely, I found it really hard to see her looking so unkempt – she wouldn’t let Vic help and I wanted to help her feel lovely about herself again so that’s when Wednesday’s became our pamper/ special dinner with her at our home.

I remember these nights very fondly, lots of laughter and moments of (I didn’t’ sign up for this as a daughter-in-law which were received with I didn’t sign up for this as a mother-in-law either) when more intimate assistance was needed if she got confused in the shower. I had to be with her all the time to ensure she wouldn’t slip, and we joked and got the giggles about the whole situation. I would blow dry her hair and paint her nails, give her a pedicure and Greg would cook a special dinner.

We would all sit at the table for a family dinner and our girls would be amazing, so patient and loving, Pat would go home feeling lovely.

We have shared everything with our teenage girls, they have known from the beginning and have been nothing but amazing with Pat, their precious Nanna. We are dealing with this as a family. Greg and I are currently training for the London Landmarks Half Marathon in support of Alzheimer’s UK – and if you feel able to support us with sponsorship that would be great.