Monday, 15 July 2013

Andrews Liver Salts ........... the last straw 11/07/13!!

I know this will sound stupid but the whole Andrews issue became the straw that broke my back, or nearly did.

Mum became rather angry that we had no Andrews and started verbally challenging me, I kept calmly explaining that I had tried to get an appointment with her doctor but he was on holiday I would call tomorrow when he was back at work.  Mum struggles with having visits from HER doctor as she doesn't remember who he is and when another is sent it is too difficult to get them to understand Mums weird ways.

I had received an email letting me know that there was a Memory Cafe at the General Hospital that day 4-6pm and I was determined that no matter what happened I would be there. I had been very low this week and was struggling to manage Mums constant challenging me.  I had attended another Memory Cafe locally but found it was more like a 'nice afternoon tea session' than somewhere that I could go and 'vent' I was told the one at the hospital was run by Jeni Bell (someone whose great reputation in dementia nursing had preceded her).

At around 3.45pm my mother decided that she wanted to go out no matter what, I agreed to go with her for a short 'walk' as I knew she would not be able to go far.  I got out her 'walker' and off we went, as usual nothing was right, the grips on the walker were wrong, the height of the handles needed changing........ On and on it went.  Mums shuffling soon developed into a wobbly foot dragging but she refused to turn back instead blaming her glasses that she couldn't see where she was going, it had nothing to do with the fact that before we left I suggested she wore her prescription sunglasses instead of her normal ones.  I lead Mum in a short circular walk round our adjacent housing estate which gives good none pavement walking! By the time she realised we were heading back home she was so annoyed she just kept on moaning at me.  As soon as we were back in the house I called my brother and asked him to have Mum so I could go to the Memory Cafe as I needed support.

I dropped her off moaning that she didn't need babysitting.  I found a parking space just outside the hospital and sat trying to decide if I should just sit there and cry or force myself to go to the Cafe.  I did both, I was so wired by the time I found the room where the Memory Cafe was being held that I must have been like a woman possessed.

I was asked if I wanted a drink, tea, coffee or juice and my reply was 'nothing stronger?' this seemed to register with Jeni who finished her conversation with a gentleman and turned her attention to me.  After our introductions I started talking about the fact that I had had a lovely midnight rhino safari the other night with Mum in Southampton ....... I was greeted with a very concerned look .......until I showed my photos she had thought I had totally cracked as she was not aware of the Rhinos!  It went downhill from there, the tears came and wouldn't stop, I babbled about so much including the inability of the A&E staff to acknowledge dementia even when I made special efforts to let them know Mum was suffering from it, the Andrews issue, getting Mum motivated everyday trying to get her out of bed and her nightie, the O.H fiasco, my counselling (or should I say my completed counselling),
I was mentally exhausted and couldn't stop talking.

I realised after a while that I seemed to have cleared the room of other people, there were now just two other people and one I seemed to recognise as being the organiser of our one hour a week carer from 'Home Instead' that we no longer had due to Mums continual cancellation of her visits.

I felt mad at myself that I could get so upset about Andrews but I knew deep down that it was just a trigger, this had been brewing for some time.
Jeni sat talking to me for some time and asked to exchange numbers as she was worried and wanted to check on me in a couple of days, she also asked me to return to the Memory Cafe and gave me some things to think about for ‘homework’.

One thing she asked me to think long and hard about and to call her today  (15/7/13) with the answer  was.......
Why am I doing this?
I am still struggling to answer that question......................

Occupational Health came to visit........11/07/13

As a result of Mums fall the hospital wanted to send out Occupational Health to see if there was anything they could provide me with to assist with Mums care, I had already informed them that we have had many O.H teams in and all found Mum impossible to work with.  They said they wanted to give it a try.....  Now as a nurse this is the last thing Mum would want and stand for (no pun intended)!

Mum was told that a nice lady called Ruth was coming at 2pm as part of the hospitals new policy on elderly falls in the home, Ruth would be coming to report back to the hospital that Mum was recovered and managing well at home.

The morning started with Mum in a bad mood so when she asked to have a bath I decided this would be a good relaxing, time consuming thing to do. All the time Mum complained about being constipated and uncomfortable which is a daily occurrence.  I had been giving her senna tablets for the problem but she had become fixated on the matter. I got Mum dressed after her bath and she even came down stairs afterwards however, I soon realised it was to go through the cupboards to find anything for constipation, even though I kept telling her I was giving her senna in the evenings she insisted on locating Andrews Liver Salts (her cure all medication!) We had removed all over the counter medicines from the cupboards as Mum keeps forgetting that she has taken something and continues to take more, however she refuses to take anything that her doctor prescribes for her as 'she knows better than he does as she was a nurse'.

I prepared a little salad for lunch and was surprised when Mum said she would have some, I followed it with a tiny serving of stewed prunes to help with her problem.  My son and his wife popped in for a quick visit before their appointment at the pre-natal clinic (third baby on the way), unfortunately Mum has no idea who they are and only manages pleasantries with them on their visits.  Ruth  O.T. arrived shortly after they did so they took their leave.

Now bearing in mind even around the house Mum needs assistance walking from one room to the next, often unable to get up off the sofa or chair without a helping hand, walking up the stairs is a very painfully slow process to watch often her knees buckle under her, walking round the garden unaided is a thing of the past....... so tell me who this spritely woman was who when introductions were done and she was asked to do various 'tasks' Mum leapt into action. Stood up very quickly from sitting on the sofa, asked to go up the stairs only used one banister and did it in record time, in and out of the bath unaided.  I think if she was asked to do a hand stand she would have done one.............. Who replaced my mother with this imposter??

We returned to the sitting room where Ruth addressed some questions to me, when I opened my mouth to reply Mum viciously told me to be quiet, it was not my business, Ruth had come to visit HER!  Mum was back.  Ruth asked to go back upstairs to take measurements for installing another drop down hand rail on the other side of the toilet (as this was where Mum fell to the floor).  I escorted her upstairs and explained that this was not a representation of Mums mobility, I showed her videos I had taken without Mums knowledge of her getting round the house and she was so surprised it was the same person, unfortunately she informed me that she could only go but what she had seen on the day! She asked if Mum was always so vicious in addressing me, I replied that there were times when she could be nice but also time when she could be so much worse than today.

On returning to the lounge Mum was upset that we had left the room and was obviously agitated as her breathing had become laboured and she was fidgety.  I explained that for Dads safety another hand rail was being fitted beside the toilet - Mums reply was that she wouldn't use it, however, she uses the second banister rail, the bath rail and the vertical rail by the toilet (all fitted under the guise of being for Dad)!  Mum throughout the time Ruth was there kept asking Ruth to feel her stomach as it was so bloated due to her being constipated, I kept telling Mum that Ruth was not a doctor and I would call hers and get him to check her out.  The Andrews debate then started with gusto to which Ruth took my lead saying that it would be best to be seen by the doctor instead of taking any more Andrews.

I saw Ruth to the door and she asked if I had any outside help, the answer is always Mum turns everyone away, SHE DOESN'T NEED HELP!!  She said to call her if things change as she would come out again to re-assess and someone would be in contact to fit the other rail within the week.

I returned to the sitting room where Mum continued to insist on having some Andrews.......

Thursday, 11 July 2013

Midnight Rhino Safari -10/07/13

Yesterday was a difficult day, Mum was very snappy, kept telling me I wasn't telling the truth. Complained that I allowed her to spend all day rotting in bed she might as well be dead.

Everyday is a challenge to get Mum motivated, Mum wouldn't even get up to see the District Nurse who came to remove her stitches and expressed concern with Mums demeanour.  One of my brothers had tried to get Mum to go out with him for the afternoon, she refused. He came round three times and used differing techniques but no! 

She just wanted to be left to die but as I kept telling her it obviously wasn't her time. Mum had refused to get out of bed and to have breakfast but I managed to get her to come downstairs and have a slice of ham, a new potato and a teaspoon of vegetables, followed by a spoon of rice pudding and some stewed prunes (bowels are becoming a constant issue with Mum!!) for lunch. 

Mum was coaxed to sit in the garden as it was lovely, also she shuffled, miserable, back to her bedroom. I went out on errands late in the afternoon and whilst out my other brother came round and managed to get Mum down to have something for tea.  He left Mum under Dads watchful eye and I returned shortly afterwards to find her still downstairs in her nightie and dressing gown, pretty much her daily wear.  

My brother who had wanted to get Mum out was not deterred, he came back told Mum he was taking a walk to Sainsburys and if she was dressed she could go too. Mum didn't say no so I shuffled her upstairs, got her dressed and hair bunned in record time and had her sitting in the Red Cross loaned wheelchair before she knew it and could object, (the wheelchair is a new addition to assist getting her out as mobility has hugely deteriorated). Off they went round Sainsburys, along Shirley High Street, back home via the park.

Mum enjoyed the trip and I was happy she had been out. For the rest of the evening we sat watching TV in the lounge with many interruptions with questions on repeat; are you out tonight, what are you doing tomorrow, what did you do today? 

I needed to go out at 11pm to collect my daughter from her dance evening and drop her home as she had no transport, Mum asked to come too.  I struggled to stay awake whilst waiting for 11pm to come round but duly bundled Mum into the car, my nephew came too and off we went in the cool of the evening.

When collecting my daughter told her we were taking a silly detour via Southampton Centre.  The previous day many decorated rhino statues has been positioned round the city and I wanted to drive round and show Mum. I went to one I had seen that was easy to park near, we got Mum (a little baffled by our unscheduled stop) out of the car and slowly shuffled her to the rhino for us to gather round for photo opportunities.  

Luckily at just before midnight on a Wednesday night there was no one around! We had a giggle and I think Mum enjoyed her unplanned safari, but who knows! 

Other than showing her the photo the following morning she will have no recollection of our sortie but my daughter, nephew and I will have a smiley treasured one! 

Wednesday, 10 July 2013

Howling at the moon.

Howling at the moon was something that used to happen in Kenya there is a time of day around dusk when all the dogs in the neighbourhood used to start howling, they would howl for maybe a minute or two and they would all stop together as if a switch had been flicked off. 

I always thought this was a strange occurrance, then one day after a frustrating day at the project I joined my dog Kim, I went outside into the evening air, threw my head back and howled.  I cant tell you how amazing it was such a release of pressure, I felt amazing afterwards.  It became part of my daily routine, I loved it and so did Kim, not sure the neighbours did but we were in a rural area and they already thought I was the  strange white lady.

Back to here and now......This last week has been a rather fractious one with Mum, she has been very difficult, refusing to eat, get out of bed, dress or basically do anything that would make her life a little better.  Every suggestion has been met with refusal or downright unpleasant responses, I know depression plays a big part in Mums demeanour but her refusal to take ANY medications due to her paranoia makes it extremely difficult for the doctors to treat her.

Last night I was at breaking point and I wanted to howl at the moon, my frustrations were building so much that I thought I would burst.  If only I had the luxury of knowing no one would call the police or lock me up I would have howled, howled until I could howl no more.

This is how I feel caring for my mother, ineffectual and frustrated, even though I have attended various 'Dementia Awareness Courses' and I try and put the thinking into practice I need to howl/scream/cry.  My daughter suggested kickboxing as a release,  I have tried yoga but it just doesnt release the beast inside me that needs to get out before I explode and to top it all my counselling sessions finished last week!

Howling at the moon is something that I am finding increasngly appealing.

Monday, 8 July 2013

Fall what fall?

Tuesday at about 2am I was awoken by Mum standing at the my bedroom door telling me that she was 'bleeding'.  I was in a deep sleep having taken antihistamine for my hayfever on top of being exhausted as per usual with caring all day and managing the house.

I gropped around for my glasses, put them on and then switched on the light, Mum looked like Carrie from the movie, her hair and face were covered in blood and it continued all down the front of her white nightie. I calmly asked what had happened and she told me she didn't know. I sat her on the foot of my bed whilst I found the source of the blood, a wound to the head by her temple, rather deep and about 1" long and still bleeding.

I grabbed my travel medical bag that I had to hand and some cotton wool, to stop the bleeding. I got Mum to hold the pressure while I went to my fathers room to ask let him know there was a problem and to get the phone. I grabbed a towel and wet flannel from the bathroom enroute and went back to Mum who was sat oblivious of all the blood.  After cleaning up the area I took a closer look at the wound, there was apparent bruising or alien object in the wound but I wasnt happy with the amount of blood it lost or the depth.  I called the emergency medical number and they went through their lengthy questions, alot of which I was unable to answer...... did she collaspe, was she dizzy, loose consciousness, what pain was she experiencing and many more. They decided as it was a head wound and we didnt have adequate information I needed to take her to casualty.

I heard Dad head off to the bathroom whilst I was putting Mums dressing gown over her blood covered nightie.  I had already secured a pad and bandage round her head to stop the bleeding. Dad called me into the shower room/toilet he had found where Mum had 'fallen' there was blood everywhere. A large pool of it was on the floor and there were lots of heavy splatters around especially on the mat.  I mopped up the pool to save Dad slipping in it as he would stuggle to get down to mop up with his Parkinsons, (I really didn't need to add to my patients) I suggested that he run a little water in the bath while I was out and soaked the mat in it I would deal with it on my return.  This gave him a job to keep him busy.

At the hospital they were very good with Mum although there were no porters around when I got there and had to find a wheelchair after dumping the car in the emergency bay with Mum in it to go find one!  We were seen quickly as it was a head wound. After triage, it became obvious that Mums dementia was making them think she had concussion so I made sure everyone I saw was aware of the dementia! 

I felt a little upset therefore that the nurse who came along to put stickers on mum to monitor her heart (incase she had passed out) decided that Mum had not responded to something she said therefore she would shout at her because she was 'obviously' deaf!  I leaned across the hospital bed towards the nurse and calmly but quietly suggested she either speak slower or repeat what she had said as Mum had dementia and was NOT DEAF!  She coloured up and apologised.

Well Mum was examined and re examined, x-rayed as no suitable answer could be gleamed from Mum as to what, where and if anything hurt.  Mum kept asking why I had taken her to hospital, what was I thinking, she had no idea why she was there.  They changed Mum out of her blood covered nightie and into a gown, much to Mums displeasure as she 'wanted to go home' this became her mantra. I kept the nightie close as often Mum kept questioning why she was there so I kept repeating that she had had a fall and a wound on her head and lost rather alot of blood (out came the nightie to show her the need to be there).  Mum was a State Registered Nurse and hates anything to do with doctors or hospitals so her requests to go home became more beseeching as the night went on.  Mums head was sutured with 3 stitches after pain relief was given and all the nurses and the female doctor kept admiring Mums long white hair (with red highlights from the blood).

Due to Mums frail state they wanted to keep her in for observation and moved us to CDU which I think means Critial Decission Unit (Something like that anyway) it was about 5am by the time we got there and Mum was transfered to a more comfortable bed and I had a comfy seat instead of a plastic one to sit in. Mum became more agitated as she had no intention of staying and it was obvious they intended for her to do so.  Instead of sleeping Mum stayed wide eyed and alert and so did I, I didn't want her doing an escape act and leaving me sleeping. At around 6.30am the lights came on and there was hustle and bustle all around as the patients were receiving early morning checks, so much for getting some rest!

Mum tried to object to having breakfast as that would mean she was staying, and refused to order lunch as that would also mean she was staying. She wanted out and big time! Unfortunately as the last one into the ward in the early hours we were the last ones on the rounds to be seen and cleared for leaving.  I actually had to keep reminding them that Mum was there and awaiting dischange, eventually they found the doctor who came over looked at the wound and Mums chart and asked a great deal of questions to assertain Mums clarity of thought.  I let him continue...... but should have stopped him after the first one but thought I would see how he went.

Q. Do you know what day it is today?
A. I don't bother myself with such things.

Q. What month we are in?
A. No

Q. What year is this?
A. Looking at me for prompting....... No

Q. Ok well who is the Prime Minister?
A. (blank look)

Q.  You will know this one.... who is the Queen?
A.  Looking at me with a blank look.

Q.  Looking at me he asked her - who is this you are with?
A.  Blank look.

He then turned to me with a concerned look on his face and said are you aware of your Mothers declining memory.

I looked at him and said quietly ....... You are not serious, she has dementia and I informed everyone so it should be in the notes that you are holding.

We finally left with notes on wound care, possible after effects of a head injury, a letter telling me to contact the surgery to get the district nurse to come and remove the stitches on the 10th July and a sense of desperation that although informed of Mums condition no one actually read the notes which meant that the one word that sends her into a hissy fit had to be repeated over and over again in front of her........... DEMENTIA.  We finally left the ward at about 12.30pm

Fall what fall?

Thursday, 4 July 2013

'The Help'

Whilst I was busy preparing dinner the other evening Mum asked me 'do you live in', without hesitation or elaboration, I replied, 'yes Mum I do'.

I had spent the day cleaning the house and doing the laundry and here I was doing the cooking so I must have been 'the help!'

I returned from Kenya in September 2012 and have been living at my parents house as full time carer since then but many times I am but a stranger or someone performing a role in the house, I am but a shadow.

Zip Wire

On Monday, 1st July 2013, I made a couple of phone calls to the British Red Cross to source a wheelchair for Mum as her mobility has reduced considerably over the last few months.  Mums long term foot shuffling is now so slow and jarring that she often looses balance even when using the walker we recently purchased with the idea that she would be able to use it and enjoy more mobility. In fact the walker has become a bit of a dust collector in the corner of the corridor as everytime I suggest it, Mum has forgotten she has it and how to use it and if by any chance it is a good day and we 'give it a go' it is too high or too low and each walk becomes a moaning session.

A wheelchair was found at the Romsey Red Cross, they were very helpful and I was soon on my way to  collect it.  It was a sunny day and I was out alone enjoying the solitude as Mum was still asleep and Dad was busy getting dressed, the Parkinsons slowing him down considerably in the dressing department. On the way home with the wheelchair in the car I had a sudden feeling of happiness and a huge smile developed. I started thinking of the amazing freedom the wheelchair would give us, I could actually wonder round the shops with Mum, go out and get some exercise whilst pushing Mum around to get her out of the house, she could have more enjoyment of her surroundings.

The good mood continued until I returned home and the realisation hit me, it would only improve things if Mum would use it, I knew I had to tread carefully and tried to work out when the time would come to put it to use.  Little did I know it would be later that day when I had taken Mum with me to pick my brother and partner up and drop them off for a meeting.  I had time to kill and decided to take Mum to visit a friend (my 'ex' mother-in-law) who lived in a block of elderly peoples flats, unfortunately or fortunately the drive to the flats was being re paved and that prevented us parking close.  I knew that Mum would not be able to walk the distance and so parked up, removed the wheelchair from the boot and after some strong convincing that she would no way manage the walk, climbed in. It was marvellous, in through the roadside entrance, up one step (handled expertly, even if I have to say so myself), up in the lift and we were in the flat having a cup of tea in record time, I was smiling from ear to ear. The return to the car was just as effortless and by the time we got home I was making plans for excursions etc, it has gone smoother than I could have hoped.

My mood quickly took a dive, as soon as we had entered the house and closed the door the complaining started... Life is boring, we do nothing, we see no one, everything is a mess, no one comes to visit any more it continued and became very waring.  I did point out that we had only just come in the door from an outing but that was already a missing memory, I let Mum get on with it whilst I started to prepare dinner trying hard to not let her dampen my good mood. At some point Mum went out the side door into the garden, I went to her and suggested I get her walking sticks or the walker as that day her mobility was awful, Mum got verbally nasty with me basically letting me know she would walk round the garden without my help and assistance and that of aids. 

I returned to the kitchen and busied myself with doing a bit of the washing up, whilst at the sink I looked out the window and there was Mum with both arms in the air holding on by her finger tips to the washing line that extends almost the length of the garden. Initially I thought she was getting her balance but to my astonishment she started shuffling along hanging on to the washing line.  My mind couldnt help but see the funny side, initially before she stated moving I could liken her to a ballerina on point with her arms above her head, but then as she proceeded along she looked just like someone on a zipwire, I couldnt help the giggle that escaped my lips. Mum eventually could reach no further as the washing line got higher the nearer it got to the pole, there was a bench seat near by but not close enough to reach her hand to. I prepared myself to run to her rescue however she launched herself at the bench and managed to reach it. I gave her a moment and strolled outside asking if she wanted assistance to get back to the house.

I got 'I dont need your help or anyone elses' and the rest of the diatribe became a murmor as I walked away back to the kitchen to continue the washing up. I kept checking out the window to make sure she was still on the bench but the moment I shot off to the toilet for a wee she had moved off the bench and was using things in the garden trying to make her way round, when I say things, I mean the trellis screen behind the bench, some ornemental posts that I still have to sink in the ground to make a feature, the post for the dovecote, I went out to the garden when I saw her reaching for another trellis that I had only just temporarily tied to hold up the vine knowing it would not support her leaning on it. I rushed to her side where she was precariously leaning outstretched trying to take hold of the trellis, I put out my hand offering it to her as support for her to take, explaining at the same time that the trellis was only tied with string and would not be strong.

She hiss at me that she did not want my help and would manage on her own even if she had to crawl on her knees to do so.  I disappeared back into the house and took out the walking sticks and stood them leaning on the post of the dovecote she was using as support, I then returned to the house. We have all learnt that there are times when it is not worth the effort of trying to help when she is in such a mood as all it will do is make her more angry,

What was all that about........... Mums kick back from the wheelchair............. pushing herself beyond reasonable safety to show she can walk,  even if it did require the zipwire performance to prove she can walk down the garden 'herself', but I am not sure who she was trying to prove it to me or herself.

My only regret was not taking a photo, Mum zipwiring down the garden... it would have been one for the album!