Positives & Setbacks

So here we are again...another month has gone by. If you've logged on or clicked the link to read this update - thank you. It's reassuring to see how many views the blog has each month, people are obviously interested to read about the progress Dad is making. 

Well, I said last month I'd probably regret being so positive as I know it can all change so quickly...and at the start of June it did when Mum and Dad fell together whilst Mum was transferring Dad from wheelchair to chair. She had to shout for help as they fell in what she describes as 'slow motion' to the floor. Help came and Dad had to be hoisted off the floor. No damage was done to either, although Mum was upset by the episode and her confidence in transferring Dad was knocked. 

We have raised concerns that Dad is transferred in different ways by various care staff, either pulling his right arm to get him up or pulling him up by his pants. When there isn't consistency - how is Dad meant to improve and gain confidence at transferring? We will continue to do it the way we have been taught by the physiotherapist getting Dad to push up with his right arm, stand tall and step across whilst supporting his left side. We do it repetitively, what more can we do? 

A disappointment this month came when Mum found an open sore on Dad's left big toe. He was complaining his foot was hurting and when Mum looked she found it was raw and weeping. This then stopped Dad from walking for three quarters of the month. It's been very frustrating after we felt Dad had progressed so well last month. He has had days where he has not worn any footwear or socks on his left foot to let the air get to the sore to enable it to dry out. We have all had to be extra careful not to knock Dad's left foot whilst it's been so exposed. As a result of this, it has prompted us to get Dad some special wide fitting shoes without seams to allow his orthotic brace to fit in the shoe more comfortably. We have also bought diabetic seamless socks which also do not rub on his toes. Let's see if these help Dad. 

Only in the last week has Dad been able to do any walking again since his toe has now started to heal. The physiotherapist has instructed staff at the home to do short daily walks with Dad from his chair to the dining table, but to date we haven't received any feed back that this is happening, and Dad has no memory to tell us anything that happens (or doesn't) when we are not there, so it is left to us as a family to make sure Dad's legs are stretched and he gets to practice walking. It is not easy. Some days Dad is positive and cooperative, other days he will take two steps and shout he can't do anymore. It is frustrating, heartbreaking - a rollercoaster of emotions...but we will not give up. If we had and we hadn't challenged the incorrect information the social worker gave us last year, just think where Dad would be now... 

Ok, so how about some positives to lift the mood. Well...following the reduction of the nutrients last month that Dad has fed through his PEG tube at night, the decision has been made to stop the feed completely as he is now said to be taking enough food orally to sustain a normal diet. It has only been a week but it is excellent news, I'm sure you'd agree? Dad now has water through the PEG tube during the night and morning, as there is still a risk he could dehydrate and further water infections could reoccur. The aim is to reduce the amount of water over time until Dad is no longer dependent on it. We are encouraging him to drink more when we are with him, he does drink full cups of tea now - although they have usually gone cold by the time he finishes them. We only hope that when we are not there, Dad has the same encouragement from the care home staff. Not having the water bottle and tube connected to Dad during the afternoon has certainly given us one less thing to think about when transferring him which is a positive. 

The diabetic nurse has also been monitoring Dad this month. Another piece of good news is that he has been taken off the insulin injection. As regular readers will know - Dad and injections do not see eye to eye, so it is excellent that he no longer has to go through the daily trauma. His blood sugars will continue to be monitored daily at alternative times...so unfortunately for now, he will still have to endure 'the finger prick', but his blood sugar readings are good and that is positive. 

Dad has been experiencing a lot of itching on his back and at the top of his bottom over the last few weeks and he seems to be continually scratching. Whether this is as a result of his medications I do not know, but we have raised it as a concern. Better to have Dad scratching than not eating, but we'd rather it wasn't happening at all. 

As mentioned in last months blog, an appointment was made for the dentist to come and see Dad. Dad cooperated quite well and the dentist was able to check his mouth. He commented that he had treated patients with vascular dementia previously and he thought Dad was doing very well considering. Dad did come across as coherent and 'normal' - until he started threatening to punch the dentist if he hurt him...the dental nurse looked on with her mouth wide open! 

The outcome was bad news - Dad has an acute infection in his gums. The dentist advised that Dad would need some teeth removing due to decay and a new denture made. Disappointing as Dad regularly visited the dentist prior to his stroke and his teeth were 'ok'. Since Dad left hospital last June, we have always made sure Dad brushed his teeth with us so we knew he was cleaning them at least once a day. A new regime has been set up and an appointment has been made at the dental clinic in July for the work to be carried out under sedation over several visits. As a result of the dentist's visit, Dad had to refrain from wearing his denture for a week - it's only for his front tooth, but for a week Dad looked like a pirate and did a pretty good impression of one too...'ooo arrr'! 

We were fortunate to spend Fathers Day together as a family at Dan and Sue's house. Dad had a good day with his family and the grandchildren helped him open his cards and presents. The bouquet of fruit we brought him went down well and he enjoyed eating it, as did we all! 

Mum and Dad also celebrated 43 years of marriage on the 13th of the month. Dad was surprised to learn they had been married for so long, thinking he was celebrating their 5th wedding anniversary. We had arranged for flowers to be delivered to Dad at the care home so he could be prompted to give them to Mum when she arrived along with a card he had written. 'Still looking well' was the message he wrote to Mum in her card. The care home made them a cake too which was a lovely gesture and they shared it with other residents. 

There are good and bad days throughout each month and we cling to the hope a good day gives us when Dad has engaged, laughed with us and remained calm. We have to pick ourselves up and deal with the emotional scars after a bad day when Dad has been tired, argumentative and vocal. There are some days when you just can not reason with Dad - when we are 'useless' 'don't know what we're doing' or 'a stupid cow', all things hard to hear from a loving dad and husband.  

We experienced one of these difficult days when we took Dad to a recent appointment. He did not want to leave the care home and venture out in the cold and wet and he told me so as he shouted at me on the car park 'Take me back inside, get me back in there, I'm not going anywhere'. He was so angry. I managed to get him in to the car, but he was clearly not happy shouting at me that he was 'going to be sick' and demanding me to get him something to be sick in 'NOW'.

When we got there, Mum went to check us in as we were running late, whilst I spent nearly twenty minutes trying to coax Dad to transfer in to his wheelchair. On the third attempt of swinging his legs round, we were successful - but only after I'd endured Dad shouting at me full blast to 'Stop it. Stop it - you're hurting me'. Passers by stopped and stared but they did not approach me. Whether they really thought I was hurting this man who was shouting as he was getting out of the car, or whether they thought I might need some help I don't know - but they just stood and stared and only moved on when Dad was sitting in his wheelchair shouting at me to 'come on' and 'hurry up I'm getting wet'.  

We all have our own coping mechanisms to deal with this endless draining experience and it really is not easy. For me thank goodness for my husband who gives me the strength and comfort to be there standing strong for my family, my work colleagues for allowing me to regularly off load and for netball to enable me to get rid of my frustrations constructively! 

It's been another month of highs and lows as you've read and we will be clinging to the positives going forward. Again we have not received any information from the PCT following their meeting with us in April, so as a family we will remain committed to working with Dad to rehabilitate him as best we can in JC. 

To you reading this now, those who visit Dad at JC and those who keep in touch with us...thank you so much for taking the time out of your busy lives to catch up. 

 Love you Dad x

Oli with his Pop Pops 16/6/13

Dad with the grandchildren 
(note the missing tooth..."Ooo-arrrr''!)

Fathers Day 2013 - Dad did enjoy the fruit
even though he doesn't look too impressed!

Enjoying a bit of sunshine and wearing
 his new shoes - Mum and Dad 26/6/13