In 2008 my dad was given a diagnosis of Parkinsons disease. For a few years he continued to cope really well, continuing to drive & go on holidays abroad, he looked after his house & finances alone & loved to spend time with his grandaughters. Gradually we began to realise that dad was beginning to present with some symptoms of the mental health side of Parkinsons, in particular vivid hallucinations, increased confusion & very muddled thinking, dad used to describe his brain as working in ‘two halves, the usual side & the side that no longer works properly’, in these days he had alot of insight still. A suspected diagnosis of lewy body dementia was eventually made in 2013. It became more & more apparent that dad needed some support at home to remain there safely however encouraging my very proud, independant & self sufficient dad to accept this was no mean feat. Eventually a package of care was put in place which for some time met his needs however as both illnesses progressed the level of need changed significantly, whilst dad was still able to have insightful disucssions around his health & well being & where his future care could be provided we talked alot about what mattered to him & it was very clear to me that dad wanted to remain at home for as long as possible, something that i continue to feel very strongly about.
In November 2015 following a lengthy hospital admission & the risks at home becoming ever more worrying it was very evident that dad couldnt remain at home safely despite having carers call 5 times a day, in between calls there was the potential for dad to come to great harm, through no fault of his own but simply two illnesses battling against each other, dad was prone to infections, wandering out of his home, to becoming disorientated & leaving the house at night time, to cooking unsafely & to falling over.
When the hospital advised me that dad needed 24 hour care i didnt dispute this one little bit just where it was delivered & that is where my next battle began, as the hospital professionals believed he should be going into permanent Nursing Care, I am really not sure they had met someone who challenged this before. Thankfully for me (& hopefully Dad!) I have a background in mental health & particularly dementia, I had also kept close to my heart dads wish to stay at home. I felt that whilst my dad needed someone to be with him at all times that he had the right to have this in his own home, in the familiar surroundings of his home of 41 years, it has meant he has had the run of his own house still & his care is very much needs led. Dad has had the continued company of close neighbours & friends & family who are still able to visit, I think these are simple but very important parts of day to day life. This isnt to say its all been plain sailing as dads insight into his needs these days is significantly less & having someone move into your house permanently after living alone for almost 20 years takes some getting used to, dad now has 3 regular carers provided by Mulberry Care who have got to know his funny ways & how to approach him to ensure his needs are met, all 3 bring different strengths from humour to compassion to encouraging dad to maintain his activity levels on the days he can, the care he recieves ensures he has his medication correctly (crucial for someone with parkinsons) he has regular & varied meals, there is always someone there to reassure him & his safety is paramount, all of this is done in a relaxed manner & all planned around dad. From a families perspective seeing someone you love very much change before your eyes can be tough going,both illnesses dont happen in isolation &have a massive impact upon those close to the person, i have two young daughters who have had to get used to Grandad sometimes saying some very strange things & acting in some unusual ways, at 8 & 11 they are now pretty articulate about dementia! for us as a family the fact that we have been able to still visit dad at home every week & do the usual stuff of having a meal & watching TV together has meant a great deal.For some months leading up to the decision of putting live in care into place i slept with both my mobile & home phone under my pillow waiting for a call, the peace of mind of knowing dad has support at all times means such a lot.
I am lucky as I have a very supportive & lovely dad so being here for him now when he needs me most isnt hard & I feel that finding Mulberry Care has meant that for as long as we can were giving him his wish of staying in his own home & I really do believe that whilst both his illnesses are degenerative & cannot be stopped making it possible for dad to remain in his own environment has halted his decline to some extent & given him a greater sense of well being. In an ideal world my dad wouldnt have either illnesses but faced with the situation we have found ourselves in I firmly believe we made the right decision.
I will give you the very brief summary of how we came to use Sam and hope the information is useful.
My parents are 91 and 85 and were beginning to struggle with the 3 or 4 visits per day they were having but my Dad refused 24 hour care. My Dad is a renal patient and my mum has Dementia.
In October 2017 my Dad fell and ended up in hospital and it was at that point that we decided they needed help irrespective of the fact that my Dad didn’t agree.
The care agency we used at the time gave us the details for Mulberry Care as they had clients who had used them and were very pleased with the help.
I cant remember the exact timescales but I rang and spoke to Sam and within 48 hours we had a lady move in to my parents home. She is very kind and genuinely looks after my Mum like she was part of her own family.
Since October 2017 my parents have had continuous 24 hour care in their own home all arranged by Sam.
The lady we got first is still the primary carer and when she has breaks another carer swaps over until the primary carer returns.
At no point have we been concerned for my parents welfare and out of the total number of carers we have had only a small number will not return but only because of their personal circumstances not how they were with my parents.
For any issues we simply take it up with Sam and let her sort it out.
Clearly this has been a big step for both my parents and us and there are elements of trial and error involved to the extent it is new and you have to learn a different approach to certain things.
My Dad was converted within a very short time once he realised that there was someone at home who he could rely on to be there and help them as needed as at that point my Dad was also trying to look after my Mum.
I would say that my Dads health improved as he was able to rest and not be as stressed that he couldn’t cope with my Mum.
So in short and to answer your question we are completely satisfied and quite frankly I have no idea what would have happened if we hadn’t done this other than both of them would now almost certainly be in a care home and probably not together.
In addition my Mum has been settled in the environment she knows which has counted for a lot with her Dementia.
Kind regards.
David.
