As an experienced nurse, I thought I was as ready as I could be to provide home care for my parents. That’s until Mum came home from the hospital, and my family and I needed to provide 24/7 care for her. Despite years of nursing experience, I discovered that we were, at best, only half prepared for the challenges and that working in a makeshift environment with family is radically different from hospital nursing. It took a while to establish a good routine; we learned and adapted along the way, as well as using what we already had at home to make things easier.
When my Dad came home a year later, requiring even more intense care, we –once again- thought we were ready, but even then we found there were still lessons to learn; we had to source more equipment for things like wound dressing, catheter care, and nutrition and had to rearrange the house further to make it all fit.
That’s why I am writing this now, to pass on these lessons. I hope they can save you time, effort, and stress and help you be more prepared to care for your loved one.
Here are my top eight tips, to adapt your space to work for you and your loved one:
- If you need a hospital bed, get one. It may seem awkward, difficult, intrusive, or even over the top, but having a bed that can be set at a decent working height and moved easily is a MUST when providing personal care. It allows for positional changes with minimal disruption, and it’s suitable for pressure mattresses that are designed to be on hospital beds. Getting an adjustable bed also makes things easier for YOU, bending all the time will only result in fatigue and injury. Depending on where you’re located, your community health team may be able to provide your with one.
- Use the correct room. This may not be a bedroom, for example, I looked after both parents in the front room of their house. You need to consider; space, light, ventilation, television access, a view (if possible), easy access to a sink, and a toilet or commode. Disruption to normal routines and moving or taking furniture apart will likely be necessary, so involve everyone in this decision and don’t be afraid to make big changes.
- Set up a table next to or over the bed. Adjustable hospital tables are best, as they can swing over the bed at any height. This gives a sense of independence and freedom for your loved one. No one wants to ask every time when they want their glasses, a sip of water or to just look at their phone.
- Set up storage and a working surface near the bed. You don’t need to be wasting time and effort to get simple things like wipes, sick bowls, blankets, waste bags, absorbent pads, dressings or tooth brushes. I would recommend a simple set of deep drawers near the bedside to store these types of regular use items. If it has a wipeable top surface this storage can double up to help you prep things (like dressings) or just put a washbowl on. Having an organised working environment will benefit everyone, especially when you are tired or if you need something very quickly (like a sick bowl).
- ‘Sitting-out’ of bed is good for everyone. Being bedbound doesn’t always mean someone cannot be helped or even hoisted onto a good supportive chair. A winged chair, with a pressure cushion is usually best. This helps with independence, mood, blood flow, breathing, eating, bowel habits and more. It will likely be an effort for everyone but it is well worth it for quality of life and for maintaining morale.
- Promote the use of commodes or the toilet. Providing toileting care within a bed is difficult, messy, requires two people and is draining for everyone. Just like sitting-out of bed, being normal(ish) when dealing with bodily functions is a MUST for self-esteem and quality of life and should be supported for as long as possible in the care journey. Getting out of bed to use the toilet helps with routine, makes personal care simpler and less embarrassing for everyone.
- Get Stuff. It’s so important to have the correct equipment! Occupational therapists and physios can assess the need and source things like walking frames, mattresses, sliding sheets, hoists, turntables or slipper pans. However the basics are important too, like a dedicated washbowl, cleaning wipes or cloths, a labelled measuring jug for urine, easy-use cups, soaps or foams, hair brushes, mouth-care items etc.
- Get a call bell (and/or a voice activated phone). It’s not a hospital I know, but having a way to request help without shouting creates independence for both the caregiver and the recipient. It stops the need for unnecessary ‘hovering’ by the caregiver so they can feel free to go into the garden, sleep in another room or cook without the fear of missing something.
I understand you may not be able to do all of the things listed above, for any number of reasons, so I leave you with my ninth tip:
Adjust the environment to suit the situation as best as you can, as early as you can. That way you will find caring simpler, a bit easier, and you are less likely to get injured or exhausted through repetitive and awkward movements. The quicker you can set things up, the quicker you can get into a routine. If things don’t work, adjust them again and move things around, you will get there. If you or other caregivers are really struggling, please ask for help and advice from experts, or similarly experienced friends.
Finally, I cannot stress how important it is to involve the person receiving the care in these discussions, in choosing equipment and setting up routines. I remember telling Mum that the backroom was going to be her new bedroom, and we had a long debate about why she didn’t want this. It turns out the back room was where she wanted to sit-out and watch the birds when she could, it became a goal. Obviously she won.
I hope you feel more confident and supported when setting up your caring space.
P.S. Remember to label the urine jug! It’s not something you want to learn by trial and error.