Nighty Night

The Night Time Routine

I’m sure many carers will identify with the feeling of relief when the night time routine has been finished and in some emotional and practical way we can clock off for the day. Maybe some can never do that but I’m lucky that my home person cannot move out of bed. It poses other caring issues of course but at least I have a few hours every night to myself. And what do I do with it? Answer – I watch a lot of TV. Netflix. Currently ‘Nashville’ a kind of musical Dallas. I have been through House of Cards, Wallender, Jack Taylor, Sense and Sensibility TV series, some other drama thing and the one about the lawyers in Shoelane. There’s probably a few more as well, Sarah’s Key and the rest. There are always some remnants of pre-caring days to attend to like emails, phone calls, other office type stuff. Long chats with family members. Their world is still important and sometimes that does not always go smoothly. At the moment my son has stopped his meds for schizophrenia and gone AWOL. I am also reading quite a lot. So when do I care for poor G, bed bound, on the commode chair or in the uncomfortable wheelchair. (Gotta get that big one back today if Pete is on the job. Its harder to line up through the doors but it is much more comfortable for hours of sitting.)

The evening winds down with the meal. G does not eat red meat and I am dying to have those last two sausages from John Harbour. Maybe in another couple of weeks when G sees them as a once a year treat and drops his nutritional ideology for one meal. But its no big deal. Steamed veggies, risotto, frittata, pasta, lentils, stir fry. There are lots of possibilities. Every meal must include the Cauciferous Family. They’re the ones that smell soon after arrival min the pot. Dad Broccoli, Mum Cabbage and the littlies the Brussel Sprouts. Condiments lift the flavour factor. After the main meal he has his dessert, quark, cottage cheese to you and me, blended smooth with linseed oil and sweetened with stevia. I have been adding strawberries for more flavour and I serve it up to him in a cup like yoghurt. Removing cottage cheese lumps tricks you into believing its delicious. It’s an acquired taste for the stoics. Then we have the meds. We have an anti prostate cancer pill, a reduce bladder irritation pill, 2 anti inflams, one vitamin D, one to reduce stomach acid from the something else, one steroid to reduce pain on the spinal cord ,one or more bowel contents softener and morphine as required and the special “organic” meds distilled from a plant. He takes some other natural therapies from the health food shop and of course some Vitamin C which he dispenses himself. He knows how I feel about that stuff excoriating the back of his throat for dubious medical reasons. The urinal bottle and the bucket are emptied for the night and he has a sleeping tablet in case he wakes in the early morning. His days are long enough. Lets bestow blessed sleep whenever we can. The doona comes off so I check the lay of his feet for the night. I reposition his legs with cushions underneath to raise his heels from the pressure point with the bed.

Those kind of dores are not pretty and very painful. I give his legs some up and down movement for circulation and they are heavy! The bed gets adjusted to a flatter position. His phone goes to the charger, the headphones and the control for the TV are within reach. His tablet and water within reach also. Leave plenty of room between table and bed so he can reach the urinal bottle easily in the night. Sometimes he needs a heat pack on his feet. He can’t move them but he can feel warmth and cold. When he is snug as a bug its nighty night and I’ll check on you in an hour.

Then occasionally there is the night when it flashes through your mind that he may not be awake in the morning. Will that be good or bad?


The Sun Comes Out, Briefly

A hour after the panic episode the sun came out but the day did not improve.

I got G back into bed all snug and then it was brekky time. After he has eaten we do meds and then his special medicine oil. The one that makes him feel good as well as the one that will cure him, kill the cancer cells and restore his legs. Very precious stuff. Thats his point of view. I have noticed that it reduces morphine and releases the bowels. Yeah, back to that! A lot of nursing is to do with that end. So after I administered G his 3 drops, I attempted to expel the air in the syringe and draw the oil closer to the dispensing end. It is rather stiff and I was carefully exerting pressure when it released suddenly and the whole lot splat over the shutters and dripped off my ornamental hanging plates.

Oh! oh! Oops!

G had seen it from the bed.

‘Scrape it up’.

Scraper, yes but what to put it in? Not a mug, not a cup, I’ve got it…a saucer.

I got my silicone spatula and I retrieved drops and scrapes from the shutters and the bench. Not a bad haul. I showed G.

‘About 3 days worth”.

I turned to put it in a safe place and then I saw the larger splat on the cornice and the ceiling.

That’s where the cobwebs are and its pretty dusty but what the heck. I clambered up and scrape, wipe into the saucer and scrape. More drops were slowly coalescing into teardrops. I got them. It left smears on the shutters so I wiped them up with my finger and guess where that went. The stain is still on the ceiling. In the meantime, today has picked up somewhat!

The hospice nurse came soon after and we got chatting. I told her about the borderline panic I had experienced that morning. I showed her the scraped remnants on the saucer. I told her about my son with schizophrenia who has added to my woes lately by allowing himself to become manic and suddenly disappearing from his flat and posting on Facebook from Buenos Aires. She gave me a hug.

Three and a half hours later I was resting on my bed next to G and the most pleasant sensation came over me. All pain vanished. Do I carry pain all the time? I have prescription drugs for various ailments, mental and physical. But do they barely touch the surface? I had waves of weightlessness and then the phone rang. The hospice nurse was concerned about the balance of G’s meds. Could she call in later for a chat.

‘Sure’, I said.

And then it kicked in. I made it to the sofa. My mind swirled with psychadelic patterns. One minute I was in the room, next I was in another realm. I did NOT feel good. I had difficulty breathing. Hoping I wasn’t over reacting I called my sister to come over. She said she would be right over. I waited and waited for hours and I called her again. My moments of knowing who and where I was were disappearing. Why is she taking so long? She lives 10 minutes away.

And then all of a sudden the room was full of people. The hospice nurse, my sister telling me to breathe, paramedics talking and laughing, somebody else.

And then the vomiting, pouring out , dry retching, stress incontinence wetting myself.

This is SO embarrassing.

‘I licked my fingers.’

“So it was an accident?’ someone said.

‘Do you want to go to hospital or to your sisters place?’ Hospice nurse.

‘What about Gerts?’ I managed to retain some sense of my responsibilities.

‘He’s fine. Do you want to go to hospital or to your sister’s?’

“I don’t know.”

‘She’ll come home with me. Her vitals are good.’ That was my sensible, reliable sister.

And that’s what happened. G’s daughter came over to cover for me and I spent the night in my niece’s bed, feeling nauseated all night, not able to sleep, my eyes looking at the underside of my eyelids all night while I lay inert, my body somewhere else.

Next morning there was a call at 7am. G’s bowels again and his daughter did not know how to get him out of bed so I was back on deck, in a hurry, fitting the sling and manipulating the hoist. And the day started all over again.

We desperately need to work out some respite time for me and as a family face up to some realities here. This is going on much longer than I thought. G’s rate of decline was so rapid for 8 weeks I did not think he would make his birthday. And here we are only a few days away. I may have to dig in for a long haul of caring as he has reached a plateau and will probably make it to Christmas and beyond. I have to take back some of my life.


The Horror of Excrement

If its animal we step around. We even collect it and feed it back to the earth. Sometimes we even pay for it and the earth rewards us. But our own is a horror unless we maintain distance and control. We do not collect it. We pay for its disposal and we clear it from ourselves as fast as possible. If we are in horror of own own escaping the boudaries we set , we are even more in horror of the faeces of others.

This morning we had a sleepin. G took a sleeping pill at 4am and slept through till 7. I was awake looking into the garden from the low window not really wanting the day except for the promise of sunshine. He was comfortable. All of a sudden he has to go. To the toilet. Something is happening in his reluctant system. Hurry!

Out of bed, pull on the polar fleece. What to do next? So many things. Pull off the bed clothes. Excrement smell in his padded pull ups. What kind of a clean up does this mean? If only I had less horror but there is an elephant pat on its way. Get the sling under him, roll this way, run around to the other side of the bed, roll that way. Pull the sling through. Run to the hoist and wheel it in. I forgot to put the battery on the charger last night. Oops! It might stop working when he is swinging mid air. Hang on! The commode chair has to come from the bathroom before the hoist is wheeled in. Get the pedals out of the way or the hoist cannot get close enough. Hitch all the sashes onto the the hooks. Of course they get caught somewhere. On the bed rail, on the hook for the urine bottle on the wheel of the hoist. There are a million places to get caught . Under the bed there is a spill of leads for the electric bed and the electric mattress. G is straining for control. We get him onto the commode, remove the slings. They get catch.

‘ Hurry Mary, its coming!’

Wheel him to the toilet. I am dry sobbing with frustration and effort. I am a wimp, I know. Defeatist. Now to lift the commode chair over the raised strip between the carpet and the tiles. It is only millimeters high but we always get stuck. It is the millimeters that strain my back the most.

‘Go to the shed and get a strip of timber about a metre and we’ll replace that,’ says G.

‘Yes G. Lets do this first.’

Commode chair goes over the loo and the blessed pullups, tear easily at the sides. Careful what you might find!

And yes I found it. Contained thank god. Rip ’em off and wrap and roll. Its no worse than a babies bottom but we have no baby here. OK. We are in time and I leave G to have his movement. What a lovely word, movement. And how blessed it is after you wait days.

There is great warmth and comfort in a hug and although G was lying down he got arms around me.

I said, I didn’t want to do this.

He said, ‘I know.’

Did he hear me correctly?

I said, ‘ I’ve a rotten life and I’ve had some rotten times with you.’

He said I’ve had some rotten times with you.

I said he has not supported me while my mother died, my father died, my brother died and my son is lost, all on his watch.

He said, ‘I’m not good at handling other peoples emotions.’

He thinks that is the responsibility of that person alone.

“You have to give me as much as you can,’ I said. ‘Otherwise I can’t keep doing this caring thing.’

‘I will’ Another hug, some more sobbing from me and I left the room to deal with my emotions by myself.

I forced a smile when I re-entered the room having dealt with my emotions and it blossomed into a real one.

‘Feeling better my pet?’

‘I’ll get you some brekky.

‘Good on ya,’ he grinned.

Grandpa’s day

It’s Fathers Day and G’s daughter made it Grandpa’s Day as well. The boys had chosen a card and written in it ‘You are the awesomest grandpa’. Signed Liam and Rory. I took some time out while they were here for time with my awesomest friends wondering how long the boys would last confined to indoors with no computer games, dogs, trampoline or bikes. Although they did have cake but that diversion only lasts  the first 5 minutes. They were taking turns in the wheelchair when I left and I wondered how long it would be before they grabbed the controls of the hospital bed and were raising poor Grandpa up and down. I was surprised to find them still here when I arrived home.

They were playing a game with one of Grandpa’s drinking straws. On the dining table they had an A4 piece of paper divided into 4 equal sections with an alternating ‘yes’ ‘no’ in the sections. They had one of Grandpa’s pill thimbles in the centre of the page. On top of this was balanced the straw.

Rory took the straw and rubbed it between the palms of his hands to build up some static, placed it on the upturned thimble and asked in a loud voice

‘Are you there, Charlie?’

He held his hand near the straw without touching it and the remaining static activated the straw towards a ‘yes’ or a ‘no’. More or less. If there was no action there were more loud exhortations to Charlie to reveal himself with a yay or a nay. If still no action, not to be undermined by any scepticsm about his possible presence, there would be more rubbing of the straw.

If the indicators were positive there was a half hearted attempt by me to look for him on the ceiling fan, behind the curtains. Small boys of 8 and 10, you gotta love’em.

Another Stage

The hospital bed made transition from bed to wheelchair easier for about 3 days. We had been given a ‘slide baord’ to bridge the gap between the bed and the chair but G did not and could not ‘slide’ on it. Because I cannot physically get his pants under his bum and up his backside, he is trying to slide flesh on the board. He had a fall backwards, just onto the bed, but the pain was excruciating. It spooked him and frightened me. We called on his son-in-law, Hamish, to call in after work to help return G that evening from the chair back to the bed. Later that night, Hamish rang me to say how shocked he was at G’s deteriorating condition. He saw for himself how little control G has over his legs. He said he considered the present way of moving him manually, unviable, and suggested I enquire about a hoist. It was a huge relief to have our difficulties validated and for him to appreciate G’st true condition. On the 4th July G was managing on a walking stick at his grandson’s 10th birthday. Four weeks later he can only get around in a self propelled wheelchair and can spend time only in bed or in the wheelchair. He can travel outside the house only in a maxi taxi. When the weather picks up come September I may be able to wheel him into the garden or even around the block.

We have mastered the hoist and G is very patient hanging in mid air while I manoeuvre the wheelchair under him. He praises me for my handling and steering abilities, not quite a heavy vehicle licence but a skill nonetheless.

The days have settled into a routine. Broken only occasionally by the odd disaster. He had a full on bowel movement in the bed one night which had me cleaning up competently at 4am and howling on his shoulder later in the day. I feared that he had lost control of his bowel due to the nerve damage creeping up his legs and that we might face it again the next night. But it was a one off unfortunate occurrence. His laxative regime had not been adjusted to allow for his intake of Cookies.

Apart from giving him the runs the Cookies are helping keep him peaceful, the morphine has decreased and we have now sorted the laxative balance.

The cheery District Nurses visit 3 times a week and Hospice is on hand 24/7. But I have not rung them in over a week. I have adjusted to being home to the point where I don’t want to go out! Weeding the garden has become sheer pleasure, just to be outside even on a cold or drizzly day. The marigolds, the salvia and the cornflowers are planted out and the soil is looking great. My sister comes to sit with Gerts once a week and busies herself with my housework. She gives the weeds a good walloping too. It was she who alerted me to G’s pressure points and showed me how to elevate his feet with cushions to avoid or at least minimize them.

I am working on my stories for a short story competition, reading heaps of Adrian McKinty ‘s novels set in Belfast during the Troubles of the eighties and watching Netflix. I have lost interest in the granny squares as they are all turning out to be different sizes because of the different tensions created by the different patterns. Maybe I’ll get back to it.

Gerts’ experience of time is distorted somewhat with the his special medicine, but it is accompanied by some euphoria which must be a blessing.

The Blow Up

The hospital bed has arrived. It would not have happened if G and I had not blown off to each other!

Sometimes emotions have to be vented before constructive measures can be taken. That’s the way it happens here. Argument is second nature to G and I like to avoid arguments. We have more misunderstandings while arguing. Because G reins in his feelings, they build to a pretty primal outburst, highly coloured with emotional blackmail and other catastrophes. I deal with it much as you would with a child. Allow plenty of room to vent and don’t retaliate or emotionally engage. That’s the general rule. This time I broke it.

The one thing that makes it hard for me to face each day is the regime of Vitamin C. He takes 100g of Vitamin C, ascorbic acid, in a powder form, on a spoon every day. High potency Viatamin C is 500mg per tablet. He would have to take 200 tablets per day to equate to his powder form. He takes 5g per dose which means 20 doses a day, which means more than 1 dose per hour because he can’t take it while sleeping. He crams them into his 16 hours waking time and if he wakes during the night I hear him self administering from the bedside table. It is impossible to have everything in reach from a bedside table with his level of mobility. He takes it from the bed, from his study, from the dining table and sometimes in the bathroom. He needs a spoon, the container of Vitamin C, the glass of water to wash it down and the glass of pear juice to nullify the extreme acidity in his mouth and throat. And if any of those elements are missing he gets desperate. If they are not within reach he gets desperate. It is a mantra, ‘I must take my vitamin C.’ It might be easier having all these things within reach everytime, everywhere, if I believed that it really was doing some good. But I don’t and there has been no evidence of improvement. I told him so. We said some hurtful things to each other. Then the doorbell rang and the District Nurse had arrived to wash him.

I had to confess to the tension as we were still sniping. The district nurse assessed some of the practicalities and ordered the hospital bed and a hospital bedside table.

A couple of hours later, G was conciliatory and we agreed he would cut down on the vitamin C and only take it from the dining table where I could keep track of everything, including top-ups in the one place. It has not only freed me from chasing all over the house, it has freed him from the tyranny of ‘the cure’.

The Hospice

Within the space of eight months we have had an estimated life span of 3-5 years down to months and now down to weeks to months.

On Monday I had G admitted to Gandarra Hospice for 2 days. He fell out of bed the previous Saturday because his feet were hanging over the edge of the bed but he couldn’t feel them. When he inched himself up on his elbows, the weight of his feet and legs dragged him off the bed and in slow motion with no means of prevention, he fell onto the floor. I could not get him up without causing pain and was thinking I would have to call for paramedics when he got himself onto his hands and poor wobbly knees. He then clawed his way up onto the mattress. The jolt caused further assault to his spine and he has taken the next step towards decline. He was frightened and I was frightened.

I called Hospice the next morning and a nurse came within the hour and talked to us . He arranged for more bedposts and also suggested that G have a short stay in Gandarra. He really sold it to G and I could see that it was preparation for an inevitable endplace and also, it would be a rest for me. They had a bed and I grabbed it for Monday and Tuesday.

G felt good about it and was acquiescent because he was helping me. I had my agenda of familiarizing him with the place and the care it offered and also getting an assessment of my fears which always seem out of proportion with what G asserts are his abilities. With two agendas, although not in conflict, we were bound to have misunderstanding and so it proved to be. On the Wednesday, with no firm date for him to come home, he went into meltdown. This was the third day. He had agreed to two days, he was behind in his Vitamin C program with no prospect of making up the missed doses. How could he possibly heal? And there was no wifi . He threatened to ring his daughter and ask her to come for him and he would stay with her for a couple of weeks. She loves him! She and her husband work fulltime and the children are at school but this was no obstacle to G in his state of panic. He was extremely depressed. Hospital processes are long and slow and it is impossible sometimes to see an end in sight. They were attending to some of his health issues that would make it easier for him to stay home but the way he saw it, I was lounging in coffee bars and taking long bubble baths, champagne in one hand, rose petals in the other while he was put away and forgotten.

He had no hug for me, no kiss. He was really pissed off.

I commend the staff and doctors for listening to his grievances so patiently, and while I sat quietly doing my knitting, a compromise was reached. One more day, if every effort was made towards his discharge the next.

He spent 4 days there in total and on the Friday came home at lunchtime. His black mood had lifted.

We had our new hospice toys to try out and our old ones to ship out. We were given a ramp (not wide enough as it turned out) for easy access from taxi to inside. There was a commode on wheels to go over the loo. It was going to be a cinch. Not quite!

It was not easy getting him from the wheelchair to the commode chair and even more difficult getting him from the commode chair back onto the bed where he has been now since 3.30pm He fell asleep with the liquid morphine and six hours later he is still asleep.

He will become more and more tired as the weeks go by until he is too tired to breathe and his body succumbs completely to the disease. I am not sure how we will manage even one week at home in his weakened state. There is no easy way for him to change position and even his arms that do so much of the the manoeuvring will eventually fail him. The doctor told me that prostate cancer of this scale chews up the body’s reserves at an alarming rate.

Is there anything to be thankful for? Well he is in excellent spirits. Extremely optimistic.

And his mental state is reward in itself. He had some visitors today while he was in his wheelchair. His two little grandee boys, 10 and 8yrs,IMG_20150808_151915015_HDR IMG_20150808_152000140_HDR were so sweet with hugs and kisses and other ways to express their concern. It did him a power of good. Children understand that people do not change because they are ill or dying. It is the same person dying as the one that played monster and chased them round the adventure playground near the lake. With a few stragglers joining in! He just can’t do that any more.

A friend who has recently lost her husband to cancer called in and took me out to lunch. So all in all, a good day.

The pictures show a super Grandpa beating the ugly monster, Cancer.