A day in the life of


#1

A day in the life of a novice carer…( with minimal poetic license) names have not been changed to protect the innocent…there are no innocents in this account.

Drag myself out of deep sleep with a momentary amnesia before the knowledge that hubbie needs attention, and probably urgently registers in my conscious brain. Stumble downstairs, trying to hold on to the bannister , no point me ending up in hospital too, though not an entirely unattractive prospect at this point. Stick my head around the bedroom door, hoping to see his sleeping form, but no, he’s awake and needing help. What to do first…madopar, ?coffee? catheter…? Hubbie is in no state to communicate or even move so I take my chances and go for meds and coffee (and my tea without which I will die a certain death, taking no prisoners)
Administer madopar through a straw, and then some fresh sweet strong espresso. Both begin to work their magic, but I realise that the sheath hasn’t worked quite so well and what at first looked like a dry bed is not. Okaaay. Manoeuvre rigid legs over side of bed and risk slipping a disc to help hubbie into standing position and onto commode and cover with fluffy dressing gown, for the sake of warmth and decency. Offer more coffee through a straw. Strip bed of various layers which add comfort, warmth or waterproofing, and bung the lot plus pjs into washer, carefully negotiating round son no 1’s catering supplies and equipment, including giant roll of bubble wrap ( 7 feet long, 1.5ft wide), the recycling bin which is overflowing though I’m sure I emptied it yesterday and the spare chair that won’t fit at the kitchen table alongside a wheelchair. Go upstairs for anything else that could be added to the wash and realise that the sink needs cleaning, again. Decide to do it now whilst I remember. Won’t take long. Have to maintain some kind of standards, what if the Queen were to drop by? Wonder if I have time to get changed myself but decide not. Open windows, Collect dirty mugs etc, and head back downstairs. Check on hubbie who seems to have fallen asleep. Wakes up and reckons he’s ready to face the day. Go to find first dose of stalevo and get porridge started. Pat self on back for remembering to use almond milk not dairy as part of trial to see if it makes any difference given hubbie’s recent apparent adverse reaction to dairy . Administer stalevo . Go back to kitchen to get wash basin of hot water. Prepare bed for bed bath use. Help hubbie back to bed. More coffee. Wonder what happened to my tea. Go and stir porridge and get waylaid by son no. 1 who wants my advice re what packaging he should use for his business. “Later”, I say. Head back to hubbie. The movement between commode and bed has caused other movements so back to the commode it is. Legs over the side, push up, get steady, lean on frame, shuffle round, sit down. Coffee. Where IS my tea? Go and find tea and put it in microwave to reheat. Son pleads for a minute but gets about 5 as I pretend to have nothing better to do than listen to his latest business plan. Shouts come from the bedroom. Go through return to bed for bath routine. Surely we will progress this time. Water in basin now cool so needs replacing. Door bells rings. “Can you get it.? “. I yell. Son nowhere to be seen nor in earshot. I grab hubbie’s dressing gown and go to the door. Another parcel for son no 1 which I sign for, assuming that the delivery man has seen it all before so a dishevelled , middle aged harridan in a man’s dressing gown and bare feet mid morning is nothing to raise an eye brow for.
Get new water, stir porridge for final time . Looks like breakfast in bed for hubbie . He disagrees. Not comfortable . Okaaay. Do bed bath, which is more pleasurable for one of us than the other . Question…How many towels does it take to do a bed bath.? Answer…Too many. Note to self. Buy more towels. Go upstairs to select clothes ( for hubbie). Go downstairs and help him dress. Go upstairs to select different shirt. Go downstairs and help hubbie put it on. Lots of movement causes the now inevitable. It’s beginning to feel like an elaborate game of snakes and ladders…just as you think you are about to get to the end, you slide down to the beginning again, and again, and again. Maybe there is time to make up the package of bed linen that son no 2 forgot to take to uni with him, or at least make a start, which I do. He’s only been there just over a week and is used to slumming it so a few more days shouldn’t make too much difference, I hope.
We finally, somehow, make it to the kitchen where a bowl of congealed porridge awaits us. Back to the beginning with that one, which is when I find my mug of tea in the microwave… That is going to count as the highlight of my day. Thinking I could be on a roll now, I go to see if the washing machine has ended its cycle, only to discover that I never turned it on in the first place , so now wonder if it can be washed and dried in time for this evening. It’ll have to be a tumble drier job despite the sunshine…sorry , environment. Set machine on quick wash and press Start. Hear the satisfying clunk of the door lock then remember that I didn’t bring down bring the rest of the dirty laundry earlier. Vaguely wonder if I will ever do anything to completion or whether I am now trapped on a hamster wheel, running as fast as I can and getting precisely nowhere. And I am still not dressed and breakfast may as well wait till tomorrow because it is time to think about what we might have for lunch.


#2

Brilliant piece of writing Pippa. You had me right there in your home with your descriptions.


#3

Pippa you have described perfectly life in our house 18 months ago after my husband had fractured his hip & was discharged after only 48 hours (it was Christmas Eve, hospital under pressure…) tho’ parkinsons diagnosis was yet to come. Sole difference is no resident DSs but toddler grandson as DIL having hospital treatment. At one low point, lovely neighbour with dementia played with grandson while I dealt with all else. I’d thought no-one could really understand but you do, as did our neighbour with dementia.

Hang on in there. :sunflower:


#4

Hi @Pippa,

Thank you so much for sharing such a detailed piece on how you handle your daily responsibilities as a carer.

I’m sure this will inspire many others on the forum just like it has inspired us. We understand that being a carer for someone with Parkinson’s is far from easy so if you ever need some support, we have info on out website with some useful contacts. https://www.parkinsons.org.uk/information-and-support/useful-contacts-carers

Do take care and thanks again!

Best wishes,
Reah


#5

Thank you . Kind of you to say so .
Pippa


#6

It is strange isn’t it how we imagine that our experiences are wholly unique, and thus foreign to others, and then discover someone or even others ( like on this forum) who has had the same or v similar experience and there’s is that sense of relief and recognition and “ you mean…you too?. I’ m not sure why that helps so much but it does. A bit like the kid in class asking the “ dumb”question that no one else dares to.
And the more that someone looks different to us on the outside, the more we think they are different on the inside, and then they turn out to be pretty much the same, i.e. full of richness and uniqueness and thoughts and passions and heartache and joys and sorrows and dreams and hopes and, and and…if we bother to take the time to find out and look beyond the externals.
Pippa


#7

Going on for 9 years since diagnosis, I dread the day this condition causes me to become a burden. I’m still able to function fairly well, but losing my independence is my worst fear.


#8

It is strange isn’t it Pippa and very wise words.


#9

Obviously I don’t know you Lily but I can tell you that not for one minute have I considered my husband a burden so very much doubt those closest to you will consider you a burden either. It’s hard at times yes, for both of us in different ways, but a burden, no.

What I find frightening is the fact that our health and social care systems are breaking down & the political will to deal with the issues properly isn’t there. People have a right to support when they need it, we should remember we all will at some point before we die, so to talk about people as ‘burdens on the state’ and ‘bed-blockers’ is nonsensical.


#10

Maybe I should have used the words “feel like” instead of “become”. Like your husband, I’m lucky in that my husband of 50 years (come Friday) would never consider me to be a burden – but that doesn’t mean that I won’t feel like one when things get worse.


#11

PLEASE NOTE: I am not Jelly_Baby, I am Lily.


#12

Sorry for the late response Lily, but congratulations to you and your husband on your 50th wedding anniversary! We still have a couple of years to go. :clinking_glasses:


#13

Thank you, Mountainair. We have just arrived back from a lovely, sunny week in the Pyrenees. Is your username attached to any particular mountain or mountain range?


#14

Sounds lovely. I was born in the foothills of the Himalayas and discovered just how beautiful they are on a return visit a few years ago.


#15

Wow, the Himalayas! Now THAT’S a mountain range! It must have been a breathtaking experience for you to revisit them.