Veronica was DX with RRMS June 85, February 98 SPMS April 2008 PMS the Neuro Consultant did a home visit.
December 31st 07 Vicki confined to bed with Grade 4 pressure wound 6 x 7 x 3.5 cm.
March 9th 2013
The day started like any other, sleep is difficult for me as I am constantly listening for a change in Vicki’s breathing, waking and looking over at Vicki to see if she is ok.
I get up this morning at 6.30 I’ve had about 2 hours sleep, Vicki is asleep I dress and go down stairs, put kettle on feed the cats have a coffee check on Vicki still asleep, write note put by Vicki’s hand and go for my paper.
Back home been 7 minutes Vicki is awake, morning my darling, as I fold up my bed that is next to her she smiles at me, I greet her as they do in hospital (it’s a joke we play) with morning Veronica how are you this morning, do you have a headache are you in any pain, do you want any paracetamol etc:? Another smile she sticks her right index finger at me and gives me the look.
This is how it works it has changed little since 7th July 2012, I start Vicki’s meds first disconnect the feed tube, 4 meds are liquid 3 tablets that dissolve in15mls warm sterile water, first flush peg tube 40mls, after each med flush with 25mls sterile water, that done reconnect feed and let her rest before I change dressings, empty drainage bag check catheter urine running free.
Coffee and read the Times, Vick got me into buying Times paper some years ago it had a poster of West life & coupon for a CD, she wanted for our daughter (well that’s was her excuse).
No Nurse till Monday because the pressure wound has healed they only visit every Monday Wednesday and Friday, unless we need them.
I have been doing this for 5 years, Vicki gets really tired (Fatigue) she also has vertigo, 1st roll onto right side on with gloves remove dressing on pressure area clean, cream then fresh dressing, remove pad and bed square and clean with wet wipes, replace with clean bed square and pad, and roll back.
Change gloves remove dressing on peg site, change to sterile gloves clean wound area (the peg site it remains an open wound)
Now have to rotate the peg tube before pushing it in slightly and gently pull back, (this is to make sure tissue does not grow round the base of tube in stomach) apply fresh dressing.
Vicki is only dressed when she has visitors as it’s less tiring for her, then we both have a rest.
I carry a baby monitor with me around the house, and when outside on the patio or down in the garden I have the call monitor (it’s quite loud) as well, because a lot of the time she can not speak.
I get a lot of exorcise up and down stairs Vicki tells me off for not using the lift, I check on her every 20 minutes, 10am breakfast a thick full cream yoghurt Vicki only manages 4 spoons, the swallowing is worse.
Vicki has decided for me to trial the home made veggie soup through the peg instead of the (muck) formula she is on, will ask but will have to thin it quite a bit, its done quite a lot in the USA, but its only way she can be veggie, more work for me but Vicki is the boss.
11am I’m back up power up lap top check Vicki’s emails I read them to her (vision is a bit poor) she loves the emails from Joe (trems) as he always puts in a joke or 2, bit difficult to read and laugh at the same time. I ask if she wants to look at A Cat called Bob on Kindle she said no.
I finish reading the times over coffee, house work duties done, Vicki watching recorded programs on Sky; she loves the soaps and bones, I can hear the channel change sometimes once she starts the search she can’t stop it, the button that controls everything is on a Velcro strap on her hand the button is between finger and thumb and she can press her hand against the chest to use it.
I would like to write every moment spent over the last 42 years let alone the 5 years spent caring for her, maybe one day when I can do it without my eyes leaking.
Its 1 30pm boiled water let it cool for flushing the peg for 2pm Meds, I try to stick to time table 8am and 10pm she has more meds than 2 and 6pm.
Medication done, next event should be 4pm remove the feed and dispose has been on for 20 hours, but Vicki asked me to take it off at 2pm, she said she’s had enough.
Beginning of October Vicki decided to come off the feed as she felt that she did not want to put on to much weight, at this time Vicki was probably about just over 6 stone, compared to under 5 stone in May, she is now size 6 to 8 and filling out In the right places. But by end of November Vicki is back on the 20hr feed.
Looking forward to our Sunday morning, Vicki has a bed bath, and I get to do it, wash n dry then pampering cream and oil massage it’s a really nice way to spend time, have to be careful as Vicki can lose body heat very quickly.
Its 3.pm I pop out for a few things and a paper, back in 30 minutes, Vicki is sleeping, so for me it’s coffee time read paper 4.30 the monitor comes to life I hear the TV up stairs Vicki is awake, sometimes I just sit and watch as she sleeps and marvel at how she puts up with this ****ing disease in her life, I know deep down that we probably don’t have much time left together.
I just wish that it was me lying in bed, as I feel that I have had my time, I have survived car & motor bike crashes, stabbed when I was 11, done what I wanted met and married a beautiful red head, have 2 wonderful grown up kids, so yes I wish it was me lying their.
I know that I’m not the one that should feel so angry but I do; I don’t know how Vicki feels, she never talks about it (MS) she has always kept busy.
I’ve had my (steak) down stairs and its time for Vicki’s 6pm meds, and roll and change pads clean and change dressing over pressure area still looking good. I sit next to her and we hold hands. Just after 8.30pm Vicki said she feels awful, she can’t explain so I phone NHS Direct.
I am asked about her condition I explain she is in end stage progressive MS and the effect on her she is completely immobile, can’t sit unsupported, can’t stand speech is a whisper and is fed through a tube in her stomach.
What do you mean, so again I explain the MS briefly, can you hold I will put a nurse on?
Yes, Hello I’m one of the duty nurses what’s the problem? Again I go into detail, is she unconscious NO is she breathing? Yes can she sit up and speak? I said No she is completely immobile.
How do you know she is unwell if she can’t speak?
A faint whisper, does she require an ambulance Not sure I think she needs a GP, well I can’t put you through to one you will have to ring Badger(out of hours GP service)
9.pm I ring Badger, Hello what is the problem? Here we go again I go into detail of Vicki’s condition; I’m told a doctor will call back.
Its now 9.40 still no call from Badger Doctor, getting Vicki’s meds ready, 9.55 Vicki is having a seizure, I phone 999 ask for an ambulance I tell them why and I am told to put Vicki in the recovery position and she will stay on the line till they arrive, she keeps talking to me as I dress Vicki in a top, 8 minutes later a Paramedic arrives.
I explain Vicki’s condition as he examines Vicki, the ambulance crew arrive, while they are told about Vicki the phone rings its badger doctor I tell him she is off to hospital. I gather her things Meds, everything that she might need.
As they can’t get the stretcher up stairs I lift Vicki and place her on a sheet in her power chair then down in the lift, (little did I know this would be last time I hold Vicki) put a double duvet onto the stretcher and Vicki is placed onto It then taken to the ambulance.
I Load my power chair into the car, and follow them to hospital, I’m asked to book her in at reception told to wait, and so I go in, Vicki is in resus, I’m told she had 2 more seizures in the ambulance. I rang my daughter and sister in law, while waiting I hold Vicki’s hand and talk to her, daughter Nikki arrives 11.30 pm, Val sister in law at 11.45pm.
Chest X-ray more blood tests, I am told the cause of the seizures is very high sodium levels, Nikki and Val leave at 3.am on the under standing I phone. Vicki has couple more seizures, I am feeling scared.
4 am I’m told that Vicki will be sedated and put on a ventilator, taken for CT then ITU, 5.30 she arrives at ITU, I’m asked to wait.
6am a doctor takes me to the waiting room and tells me he will be back as soon as he can. At 8.am he is back his name is Dr Frietag Vicki is in a critical condition and asks if they can cut her top off, I said yes.
I phoned my son and daughter also sister in law and told them, my son said he would come up from Bristol as quick as he could, Nikki and Val here in a while.
9am Dr is back it turns out he is a consultant, and sits with me as he explains Vicki’s condition, she is in a critical state, the MS as devastated not only her swallowing but also her heart, lung and chest muscles, if her heart was to stop clinically they could not save her, the CT scan is clear Sodium levels are high & can affect internal organs, Calcium levels are low, and not able to expel Co2 from the blood.
He continued saying that when I go and see her not to be alarmed, as she has a mask on and a machine breathing for her and quite a few tubes to monitor her condition.
With all that I had been told I was still shocked at what I saw, I was still trying to take it all in when Nikki came in, and then we were told that because of her condition they were withdrawing the sedation to allow her to wake, could take a while.
I had been at the hospital since 10.30 last night, so I was told to go home for a while, which I did, fed the cats had a coffee and nodded off in my chair, only slept for half hour went for shower and shave then back to hospital.
Vicki was off the ventilator and had a full face mask on, and the bed moved near a window, a nurse looking after Vicki introduced her self Staff nurse Michelle, she will care for her, she explained that once Vicki was awake she would be taken to HDU
Michelle explained to me what had been done to help Vicki,and that she could wake up any time,and to talk to her as it helps her to respond.
Val and Bev arrive, I tell Val what I know she is shocked, 2pm my son Lee has arrived he was very upset when he saw his mom.
Nikki,Bev and Val leave and Lee goes to our house to feed the cats.
Michelle asks me if I want anything I say no thank you, its 6pm Vicki not awake yet, Lee and Nikki are back and talking to Vicki, she is so pale, she has 2 lines in both wrists also in the left side of her neck all attached to drips and monitor’s, time has gone so quickly, 7.30 Michelle say’s we can’t stay and to go home and they will phone me if there is any change.