My Pathway Journey-continued

I had made my mind up on the previous Thursday that this weekend was going to be “the weekend” that it happened. There are normally less visitors planned on a weekend, and as a consequence there would be more time to adapt and get myself prepared for it.

The pressure had been building up in my head or a while, however my physical state and the extended periods of exhaustion had allowed me to put the whole thing to one side knowing that I wasn’t physically capable of undertaking what could be a demanding task. Well, there was no point in actually saying “could be” I reiterated to myself, considering you can barely talk after having a wash and shave on occasions – having, or attempting to have a shower would without doubt – knacker you out.

It was only around three weeks ago that having a shower didn’t present me with any particular issues, but that was then – and not now. Having a shower was going to require a significant mental and physical effort. Why mental? Because in my physical condition I had to face the fact that this task may require the support of the Care Assistants whose job it was to aid you, and that meant for me relinquishing a level of personal care that I had not had to do before.

Just a couple of days beforehand the care that was being provided by St. Peters Hospice had been replaced by an Agency – a seamless transition they said. One of advantages of the new provider was that their visits would be the same time every day – 10am, and two people for 45mins. The reality of course is always something different, but not to a degree that it was or is an issue to date.

It was Sunday morning and my two carers arrived on time. I explained all that was going on in my head, from the physical challenges that I might face to the thorny subject of exposing my body to strangers, knowing I could be 100% reliant on them getting me out of any mess that ensued.

We had all additional equipment in place, a seat in the shower, a seat outside the shower. A plastic bag to wrap my syringe driver in, shampoo and body wash. It had been weeks since I had a shower.

The carers were of course great – they had witnessed it al before. I still have to work out the part of the DNA they have to undertake this work. To be able to quickly assess an individual emotional and physical needs to be able to support the personal in their care needs an infinite amount of diplomacy and tact, just for starters.

The process for me was relatively straight forward, just a case of manoeuvring myself to one side and sitting of the shower chair when our shower decided to throw one of its short “have some cold water” tantrums. I sat on the chair when the temperature returned to normal, letting the water cascade over my head. For a minute it was utopia until I decided it was time to get out and get dry. The second seat, positioned just outside the shower door was just in the right place and reachable with the aid of wash basin. I was completely exhausted, and armed with a hand towel in one hand and a bath towel sat on top the w/c. I managed to slide the hand towel under the cheeks of my backside so I was sat on something dry, and then began drying myself as best as could. I say as “best as I could” because raising my arms up to try and dry my head and shoulders etc was pretty impossible.

Managing to raise myself slightly to get the attention of my two Care Assistants, strategically places the other side of the bathroom door, they were immediately alongside me to “take over”. Yes, with the same level of care and consideration and patience. It took them both to get me suitably attired and back into bed. Nothing was rushed, and with me being unable to form any words or express my opinions vocally we reverted to “nodding heads” and “thumbs up” signs to communicate.

 My first assisted shower had been completed, and I was happy and once again I had learned the limit of my current ability when it came to doing basic everyday tasks for yourself.

As I write this, just a week on from “S” day (S standing for shower) I have to report that the plan to make every Sunday “S” day have failed. No two days are the same and it was obvious when I woke up this morning, I knew it was obvious that I didn’t have the energy for that to happen. Exhaustion remains the single thing that continues to present a deeply problem, something I discussed at length with a member of the St. Peters Mental Health Assessment Team that came to see me during the week. We spoke at length over the mental and physical challenges facing people living with a terminal illness, those who maybe living in residential care of some type, or those living in their own homes. Finding a way through this maze of emotions can be difficult. I constantly need to remind myself that you just have to do it, if not, then what is the answer – to give up? There is nothing we can do about the diagnosis; nobody can change that. But I can hopefully influence my day today, and tomorrow. But to do so requires at time a monumental effort from yourself, and of course the assistance of those closest to you. Battling this illness can be a solitary journey if you keep those who have the love, support and skill at an arms distance.