A DAY IN MY LIFE

The whole reason I started this blog was because I wanted an outlet to put down my feelings about my husbands brain cancer. I've many times tried to do this but so far haven't managed it; a) because I dont have the time
b) because I find it too upsetting
I want to put something down in words though so have decided to try to do a "DAY IN THE LIFE" posting. It may mean I have to keep coming back and editing to add more as I dont think I'll have time to do it in one sitting. Any way here goes!
Info:- Hubby cant speak, move or talk. He is totally unable to communicate, unable to feed himself (most meals take at least an hour to get down him) and is doubly incontinent. His arms are clenched up to his chest and almost impossible to move; which makes dressing very difficult. It is thought that he has no short term memory and is not aware of his condition. I dont tell him he is dying - if he is blissfully unaware of it why make him unhappy? We sleep in our living room as there is no way to get him upstairs to the bedroom. The timings are not hard an fast - it only needs a phone call to come in or a knock on the door or hubby having a REALLY bad choking fit or needing an extra long clean up after having bowels open and all routine is changed.
N.B.
Text in blue is additional information depending on what day it is or if we are due visitors etc.
A DAY IN THE LIFE OF A CARER
6am
Been awake for about half an hour. Busting to go to the loo but been holding it cos still dark outside and its so cosy in bed. Gotta get up tho - hubby could rouse any time between now and 8am and if I dont go to the loo, wash and dress now I dont know when I'll get the chance.
6.15am
Quickly put kettle on - check on hubby. Upstairs for loo, wash and dress - check on hubby. Have a coffee, wash up any evening dirty crockery - check on hubby. Turn on computer and check for post and bank balance - pay any due bills online - check on hubby.
7am
Hubby rousing, chat to him while I open curtains, sit him up and put his glasses on him (dont know for sure how much he can still see but wont chance leaving them off). Go into kitchen and make hubby his morning tea in a bottle - unable to take it from a cup. Takes a while for him to be able to drink his tea - chokes a lot first thing in the morning. Chat constantly to him - I surmise that his short term memory is practically non existent so usually the same conversation every day unless I have any new family or world/sport news to give him. Text Lynn to let her know Dad awake - she will then usually phone. Receive and answer text from Leanne.
7.45
Hubby managed most of his tea. Starting to lick his lips so making him some porridge for breakfast.
8am
Give hubby his steroids (only medication he is on) and feed him his breakfast. He has one of his "funny turns" - gazing into space. Always falls fast asleep for about 10 mins after one of these. Manda pops in on her way to work to check we are ok.
8.20
Hubby wakes up again. Rewarm breakfast and continue feeding hubby. He manages to eat it all and then falls back to sleep.
8.45
Clear up breakfast things. Make my self another quick coffee - check on hubby. Tidy up living-cum-bedroom.
9.15
Get hubby washed and dressed. This has to be done while he is laying in bed. Involves lots of turning him on one side and then the other in order to change incontinence pad and get his clothes on.
9.45
Using electric hoist get hubby out of bed, tidy up and put washing on and :-
If visitors due the next day - put hubby in arm chair so I can go upstairs and get bedrooms clean and beds made - constantly running up and down stairs every 10 mins to check on him.
If weather fine and shopping needed - put hubby in wheelchair and push him to local shops.
If weather fine and no shopping needed - put hubby in wheelchair and sit him in garden while I do gardening.
If weather bad sit hubby in arm chair and chat to him about family or garden; may put on a dvd for him to watch/snooze to; in which case I will either do some cake cooking (especially if visitors due next day) or other general chores.
If we have a visitor and dont go out for a walk, sit hubby in arm chair.
About once every six weeks manage to book special transport which we can get hubby in wheelchair in. Will then go into nearest town or to a garden centre for a couple of hours.
11am
Try to get hubby to have a drink if he wakes for a while. Sometimes if we are in the garden I feed him an ice lolly. Hubbys brother usually phones about this time.
11.30
Put hubby back on his bed. Get lunch ready.
12am
Feed hubby lunch, will have something my self too. Manda pops in in her lunch hour.
1.15
Clear up lunch stuff. Change incontinence pad if necessary. Do prep for evening meal. Make any necessary phone calls, open mail, do any other housework or gardening I need to - maybe be very lazy and spend an hour on the computer! Sometimes friend Sue pops in and has a chat. Check on hubby continually!
3pm
Try and get another drink down hubby. He finds drinking very difficult and gets very dehydrated - NOT GOOD!
Fridays:- Manda comes and helps me give hubby a shower. This entails undressing hubby, putting him in wheelchair, wheeling him into kitchen and placing wheelchair in a kiddies paddling pool. Using jugs of warm water we can wash his hair and "shower" him the best we can. Then have to hoist him back on the bed and dry him. Then hoist him back out of bed to put dry sheets on bed then hoist him back in. We have it down to a fine art now and can get it all done in an hour.
3.30
Make sure any wet washing is put in drier and any dry washing put away.
4pm.
Depending on length of time needed start dinner cooking. If a "quick to cook" dinner may quickly wash my hair, cut my nails or hubbys.
4.45
Lynn phones and has chat to her Dad
5pm
Sit up hubby ready for dinner. Feed hubby dinner. Will try to have something eat myself at the same time. As long as he has not had a "funny turn" or choking fit hubby will have finished main course by 6 and dessert by 6.30. Leanne will usually text or ring.
6.30
Tidy up kitchen after dinner. Thank God for dishwashers!
7pm
Manda comes round and helps me get hubby ready for bed. Usually stays for an hour and makes me a LOVELY cup of coffee. A very special moment in the day to sit down and have someone wait on me.
8pm
Get my night clothes on. Know its early but it makes me feel more relaxed.
9pm
Hubby usually rouses and try to get a drink down him. Sometimes, if he has not managed all his dinner he will lick his lips and so I'll feed him a yoghurt or some fruit. Usually settles down again by 10pm.
10pm
I will watch some tv or go on the computer. This is my chill out time. Sometimes I feel so tired I go to sleep but then usually wake about 2am and cant get back to sleep till 5am (just listening to hubby sleeping) so try to stay awake till midnight; then I find I can sleep till 5am except for the occasional visit to the loo.
Well that's about it. Of course there are all the other little things fitted in odd moments on different days; sorting family birthday cards/presents, putting out dustbins (we have 4 different ones put out on 4 different days!, hairdresser coming to cut hair and all the other little things we all have to do whether we are carers or not. Somehow it all gets done!

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