Tomorrow's a new day

So in a blink of an eye that was January.

Dad has had good times and bad times...and as always we have had to take each day as it comes.

Such was the case when we were informed that Dad has post stroke Vascular Dementia.  I had asked the Doctor to reconsider putting Dad back on anti depressants. From my research, it is not uncommon for stroke survivors to take anti depressants as they come to terms with their new life, and we felt this may help lift Dad mentally. We were advised to wait for a mental health assessment to be carried out first.  

The assessment was carried out this week. The Doctor advised us that Dad was aggressive to both him and the carers when he arrived, but once he'd explained to Dad that he was a professional and took him to the quiet lounge to speak to him, he said Dad changed and became much calmer. When the Doctor asked Dad how he felt, he replied 'OK' and told him he was happy. The Doctor concluded from the hour he spent with Dad, that he is not depressed and therefore does not require anti depressants.  

The Doctor went on to confirm to me in a telephone conversation that Dad has Vascular Dementia (VaD) as a result of the stroke - this is the first time anyone has stated this to us and it felt like yet another knock back. Research of what VaD is describes Dad's symptoms:

• Memory loss
• Confusion
• Mood swings and personality changes
• Language problems
• Difficulty paying attention or following a conversation
• Impaired motor skills
• Difficulty planning and organizing tasks
• Visual orientation problems
• Difficulty with calculations, making decisions, solving problems
• Depression-like behavior
• Patients with VaD often deteriorate in a step-wise manner, with symptoms becoming greater with each new stroke. Sometimes, however, dementia can come on abruptly as the result of a single stroke, depending on the location and size of damaged brain area.
• Patients with VaD may become more dependent upon family members or caregivers for assistance with activities of daily living due to physical and behavioral changes.

So it's a bit of a reality check for us all to understand exactly we are dealing with going forward and we now have a 'term' to use rather than describe all of the changes in Dad.  Unfortunately, as many of you will know, there is no current cure for dementia and no way up.

Regards Dad's frustration and behaviour changes that have continued more than ever through out the month of January, the Doctor suggested that the care home monitor Dad to try to understand what the triggers are in making him angry. As a family, we spend a lot of time with Dad so we have been able to identify some trigger points ourselves. We know too many voices at once and too much noise can effect Dad and when too many people are standing over him - that's why we try and crouch down when we speak to Dad to explain things. Dad's anger can come on in an instant - as though a switch has been flicked. We were advised that frustration will be the cause of much of the anger.

It's not a nice experience to be on the receiving end of it either. But I try to tell myself, its just in the moment, as a few minutes later, when Dad is calmer, he doesn't recall shouting and swearing - and certainly wouldn't believe he'd directed it at any of us. Some days Dad will have his injections without so much as a murmur ...other days he squeezes our hands so tightly, curling his tongue with anger, or kicks at the nurses whilst swearing. There doesn't seem to be any consistency to his behaviour.

We are informed from Dad's written 'behaviour records' that some mornings he gets up happy and even sings, but these days becoming rare as he lashes out swearing aggressively at the care staff.  Some of the reports make very difficult reading for us, spitting food, punching staff and the quotes of the language he uses are extreme.

This new information makes us question whether Dad has needed to be be on all of the antibiotics if his behaviour stems from VaD and not a UTI? Dad's urine remains infected.  A sample of urine sent to the hospital again this month to check for growths confirmed there was 'something' still there. Another course of antibiotics and and a higher dosage to Dad's daily antibiotic was therefore prescribed. Following our request for an appointment, Dad is seeing the Prostate Consultant this month, so we hope that some new information might come to light as to why Dad has this reoccurring UTI - if at all it is one??

We have been working hard with Dad to encourage his eating and to help him put on weight. He was 76.9 kg when he was weighed last weekend which is positive, as he was 77 kg back in August at NG before his two set backs to hospital.  

Dad's eating habits vary - although he consistently doesn't ever eat any breakfast. This is likely to be as a result of being full up from the nutritional feed that is being fed in to Dad though his PEG tube during the night. In September, the nutritional nurse had decreased the volume as she felt his oral intake of food could warrant it, but after coming out of hospital it was increased again. Unfortunately, following a visit this month and reviewing Dad's records, her decision was to keep Dad at the higher rate.

A friend has been bringing some soups in for Dad to eat. Dad has been enjoying them saying 'it's delicious'. I took him a broccoli and stilton soup but it didn't have the same effect....'Urgh' he said 'this tastes metallic'! Pea and ham it is then!

Following on from the jaffa cakes that Dad has been enjoying, we found he is quite partial to a cream cake. He enjoys a cup of tea and a cake in the afternoon with Mum and his visitors - although we must monitor how many he has as he is a diabetic. It is lovely to see Dad sipping a cup of tea - something we all take for granted, but it has taken Dad eight months to get back to doing and enjoying it. Dad takes the smallest of sips, so it is an achievement  when he drinks even half a cup. We have also been taking Dad soft fruit - he enjoys eating bananas and mango.  We still have days where Dad refuses to eat anything at all, no matter how much we try and encourage Dad to eat - those are worrying days, but as we say; one day at a time. 

We took Dad out for a couple of walks in his wheelchair this month - before the snow came. His Christmas mittens and blanket were put to good use as we wrapped him up warm to get some fresh air. It seemed to lift his mood, and again he showed concern for whoever was pushing him and smiled as he saw Oliver's excitement at seeing a train speeding under the bridge we were on.  It is always a pleasure for Dad to see his grandchildren, although he does become emotional when he first sees them. Dad enjoys playing ball (using a soft ball!) and drawing and colouring with them too.

We had been informed by the activity coordinator earlier in the month that Dad would be having a game of golf on the Wii, but to date we have heard nothing more. To keep Dad stimulated and engaged,  Mum set up his golf game that returns the golf ball back after putting it. She has done this a couple of times for Dad and he has enjoyed it....until his attention span runs out and he picks up the golf ball and throws it at the wall. Dad, has a habit of throwing things, which can obviously be dangerous, including cutlery, his alarm clock and paper towels.

So how is Dad progressing physically? Well, he continues to work with his physiotherapist. She has been able to get Dad to walk short distances in the main corridors of the care home to get him used to a more realistic environment. Other visitors and staff have applauded Dad at seeing him walk, aided with her support. They are used to seeing Dad in his wheelchair, so it is a massive achievement to see him taking some steps.  Dad, frustrated and proud, doesn't always appreciate the praise and shouts at them to 'F-Off'.

Dad's new AFO brace finally arrived six weeks late.  He has been wearing it for short periods of time to get used to it. It is amazing to see Dad take steps without the physiotherapist having to guide and place his left foot!  Dad can take about ten steps very slowly and 'doddery' and still needs his physiotherapist to stand beside him and support his left arm as there is a high risk he could fall backwards as his balance isn't good. As you have read, Dad is unable to form a short term memory - if he could I know there would be nothing stopping him from walking again - he would be determined and he would remember what he had done from one day to the next. As it is, each time Dad walks it is like relearning from scratch. Although he calls himself a 'cripple' and is very down on himself, we are so proud of him. Based on the physical progress he has made to date, I am sure he will continue to improve, all be it slowly.

We brought Dad out of the care home for another home visit last weekend and brought him back to Dan's. Again he travelled well with us sitting in the front of the car - unlike when he is transported to appointments in his wheelchair by the care home's vehicle when he ends up being sick. Dad seemed relaxed and comfortable in home surroundings. He enjoyed watching the football on TV and having a cup of tea. It was obviously a much more comfortable environment to be together - not just for Dad, but for his grandchildren too. The only downside was the visit to the toilet that Mum and I helped with. Dad let rip at us shouting loudly. It wasn't a great experience, but we got through it, Mum was left emotionally upset but we did it.

From my research, there is nothing that explains to you what an emotionally draining experience it is dealing with a family member who has suffered a massive stroke and who has 'vascular dementia'.  Nowhere does it tell you how you will feel - that sometimes there will be tears and sometimes there will be anger.  That there will be feelings of guilt, helplessness, anxiousness and fear - and more often than not all at the same time! This experience could so easily tear families apart, but I am so proud of how we have all pulled together to bring us even closer and make us stronger. I am so proud of my Mum, the way she finds the courage to fight when Dad's having a bad day, how she holds his hand and encourages him, I know it makes Dad feel better just having Mum by his side. 

There is so much more that I could tell you about this last month, but I won't go on.  You have an understanding of what we are dealing with as a Family.  If you want to come and visit Dad - you know where he is and you know what to expect, of course we understand for many people it is a difficult experience to see how much Dad has changed.  But we still share loving moments with Dad - and those are the moments we cling on too. Everyday is different and that is what we tell ourselves after a bad day - 'tomorrow's a new day'. 

Thank you for all the support we have received from friends and family this month - especially when travelling has been made so much more difficult by the snow, it has been a difficult month in more ways than one! 

Love you Dad x

Dad and Oli before a walk 12-1-13

Dad concentrating whilst wearing his
new AFO brace 26-1-13

                                                                                               

Who would know Dad wasn't his old self??
31-1-13

Dad, Mum & Ruby at home 27-1-13