I have been caring for a relative with dementia for 8 years now. My mother moved to the Highlands with my husband and I and was diagnosed with A and VD in 2011. We were running a B&B and this gradually became distressing and confusing with the constant coming and going of 'strangers' for my mother. The local social services were always very helpful and supportive, but 24/7 care becomes extremely stressful with other responsibilities and duties to carry out during the day. I would be lying if I said that the situation didn't have negative effect on my husband and my relationship at the time. His help over the years was amazing and he often had to help me with tasks that were both delicate and undignified for all of us especially my mother. The fact that they had always got on was an absolute God send! As my mother became increasingly disabled with other health issues and very frequent falls, she finally went into care at the end of 2015 and sadly passed away in the spring of 2016 just before her 86th birthday. During the spring and summer of 2016 my elder sister was going through the lengthy diagnostic process before being finally diagnosed with dementia in the December of that year. Being single and working abroad it was necessary for her to retire early (she was just 63 yrs at this point) so we brought her up to the Highlands to be near us. Unfortunately she has now deteriorated to the extent that she lives 'independently' by the skin of her teeth...with many services in place and my husband and I filling the gaps as she grapples with daily living and a deteriorating awareness of her disabilities. A night alarm tells us when she gets up (frequently) so we ring to tell her to return to bed. Door alarms warn her to go back indoors during the night to keep her safe from wandering locally...which she has done. Registering with the Herbert Protocol is highly recommended. She is no longer allowed to use her cooker, and is not always able to work the microwave, so I call round in the early evening to heat a ready meal for her. Carers call later to check all is well and administer her medication. A charity called Carr Gomm provide a few hours each week, when a carer takes my sister out..fortunately it is the same member of staff that used to take our mother out, so she feels like a family friend. I now childminding my two little grand-daughters, 2 and half years and 11 months, full-time as my daughter has gone back to work. Obviously this has severely affected the time I can give to my sister... so I live with a constant feeling of guilt that she is lonely and unable to do much with out us.
I'm sure there are many many other carers out there that are in similar situations. I just find sometimes that my whole conversation is related to caring and the latest antics...it consumes my thought process almost 24/7.... This is such a wicked disease....not only does it rob the sufferer of their personality, their dignity indeed their life as it should be...it breaks the hearts of those loved ones who have to witness the decline knowing that ultimately there is only one final outcome. I know this doesn't read very positively but the day after day worry certainly takes it's toll after a few years.....
I'm sure there are many many other carers out there that are in similar situations. I just find sometimes that my whole conversation is related to caring and the latest antics...it consumes my thought process almost 24/7.... This is such a wicked disease....not only does it rob the sufferer of their personality, their dignity indeed their life as it should be...it breaks the hearts of those loved ones who have to witness the decline knowing that ultimately there is only one final outcome. I know this doesn't read very positively but the day after day worry certainly takes it's toll after a few years.....
