Caregiving Hacks & Tips

A Rolling List of Ideas

Hello, Dear Reader! Welcome to our new Carer Mentor community members!

I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

Let’s consolidate our hacks and tips to help each other!

This article provides a reference list of Tips, Hacks and Ideas that help us daily.

Drop any hacks and tips in the comments.

Please ‘❤️’ LIKE the article so others can benefit from our experiences.

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Table of Contents

Priming for Hospital

At Home Monitoring

Communication/Medical Consultations

At Home

• Organising

• Eating and Drinking

• Sitting comfortably

• Gadgets, gifts and innovations

• Showering

• Sleeping

• Safety

• In Home cameras

Outside, Away from Home

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Priming for Hospital

1. Hospital ‘Go Bag’ for Emergencies

   • Short-sleeved pyjamas (so the canula/injections into veins is not impeded)

   • One change of clothes, including a cardigan, as one arm may need to be out for injections/a cannula. E.g., a vest or a tee shirt (no buttons or zips). E.g. Trousers, tapered ankles/jogger pants, socks, fleece.

   • Warm dressing gown that can be used as a blanket over the thin hospital blankets. Patient rooms get cold at night. A long, warm dressing gown can also act as an overcoat.

   • Bed socks with rubber grips on the soles. It is better than taking shoes/slippers on and off

     • Poor circulation can make feet cold at night. The grips can offer extra reassurance in bathrooms

     • Pyjama bottoms can be tucked into socks if they're a bit long.

   • Small towel & Washbag: small liquid soap, flannel, small travel-size toothpaste, toothbrush, headphones, earplugs (noisy on a ward), pen, post-its, phone charger.

   • Face wipes and toilet wet wipes. Roll of toilet paper. Why do hospitals only have thin sheets of single-dispensed paper? Not great for toileting.

   • A half-empty tissue box to act as a holder e.g. spectacles on the bed table. OR Spectacles case and large tissues

   • Small bag of current medications NOT full pack, as we rarely get them back.

2. Caregiver's Go Bag for ambulance trips.

   1. Essential patient reference documents:

      1. List medications (dose and frequency of administration), including allergies to medication or latex (dressings/plasters). Five copies

      2. Medical history summary- highest priority conditions, last investigations, incl. CT, PET, MRI, endoscopy, colonoscopy, biopsy, and blood tests (haemoglobin, blood clotting factors, cancer markers). Five copies. Be prepared to make clear statements of this to medics. (See below about communication)

      3. Name of primary care physician/GP and surgery practice

   2. Small notebook and pen, to write down everything plus the names of EVERY person, doctor, nurse, health care assistant, each paramedic. Names and titles in a book and using them in conversation is essential.

   3. YOUR PHONE! The simplest most important thing and I missed stating it. Thanks to

      Dawn-Renée Rice
      for highlighting the phone, and important info as the giver/receiver of care!

      making sure your phone is set up that emergency contacts and medical information is accessible in case of incapacitation, like in an accident or something.

      Especially with blood type in case of needing a blood transfusion. I have O negative RH negative blood type and can only receive that type. O positive or any other can be harmful, for example.

   4. In a notes exchange with

      Amanda
      I remembered this tip ‘Record the conversation’ - your Phone is a great way to record conversations (let the person know you’re recording so that you don’t miss important information). Time can pass fast. To not miss anything, and to listen back later. I think we’re meant to tell the doctor/nurse we’re recording for our own personal use. Sometimes I do, sometimes I don’t. I may emphasise I’m recording if I’m getting the ‘brush off’ or ‘yes dear’ spiel! Apple watches do this too, I think.

   5. Powerpack to recharge your phone: One of the best buys. Check your phone's compatibility.

   6. I don’t take headphones or ear pieces for my phone because I need to overhear everything people are saying, AND listen out for symptoms changing.

   7. Protein bar and individually wrapped biscuits. To avoid hypoglycaemia, I carry these in any bag we take to appointments.

   8. A bottle of water with a plastic straw, for your loved one because no one can drink from a bottle lying down, and a paper straw dissolves fast.

   9. Tissues, wet wipes, small towel/flannel.

   10. Depending on your family member's needs: incontinence pad x 2, underwear, wet wipes.

   11. Plastic trash bags for dirty clothes/waste

   12. Cotton washable scarf that can double as a shawl/blanket/pillow

   13. Face mask and hand sanitiser.

   14. Cash for a taxi. Twice I needed to ride in the ambulance and needed a taxi to get home around midnight. Have a local taxi company number ready.

   15. A box of aspirin and paracetamol. This may seem odd if you’re going to a hospital but twice I’ve had a headache/symptoms and it was hard enough getting attention for my parents, so now I take medication for me. FYI Aspirin

       Aspirin works by reducing this stickiness, which in turn lowers the risk of blood clots forming and makes the blood thinner. This is why the NHS recommends chewing 300mg of aspirin if you think you’re having a heart attack. You can do this while waiting for an ambulance to arrive.

At Home Monitoring

1. No Touch Forehead thermometer. Purchased September 2024.

   1. If your loved one is immunocompromised and has a temperature over 38’C use a cold wet flannel on their forehead to bring down their temperature.

      I’ve been advised to call for an ambulance at this temperature. It’s worth priming yourself with medical advice for ‘Alarm symptoms’ and ‘what to do when…’ scenarios.

2. Oximeter: Pulse and Oxygen saturation Similar to the one we purchased in 2020

   1. Pulse Oximeter(Amazon) and How to use a Pulse Oximeter at home video. Normal Oxygen Saturation 95-100%

   2. NHS (published in 2022) How to use a Pulse Oximeter and a handy tracking sheet.

5. Blood Pressure Monitor Similar to the one we purchased in 2017

   1. How to use a Blood Pressure Monitor (British Heart Foundation Webpage and video)

   2. The electronic monitors can be glitchy. I recommend taking 2-3 readings.

Communication/Medical Consultation

For an emergency be prepared. I recommend having your ‘6-second Emergency Info-Speech’ ready so you can focus on immediate issues!

1. Symptoms & current situation: what, when, where (location on body), intensity, within what timeframe and compared to your loved one’s norm

2. Medical history in brief

3. Current medication

4. Medication allergies

💡Consistent, clear, direct priorities/information. Use these articles to help prepare:

Consultation with a doctor - how to help ourselves, close patient-physician disconnects.

1. 'How to close patient-doctor disconnects.' Building our language/questions to feel like we've done our best to advocate for ourselves AND improve our chances of being heard in a medical consultation.

   What do you say when you’re consulting with a doctor or nurse?

   How can we advocate for ourselves, identify actionable phrases to use with medical staff and close potential patient-physician disconnects?

2. 'Beyond using the right words, how can we improve our interactions with doctors?' What can we do to be heard in the medical consultation?

   Each moment counts. How much alignment and understanding will you and the doctor have in an emergency? How can we optimise the dynamics and interaction as the patient/caregiver?

At Home

Organising

1. A Caregiver Organiser in How to Reduce Stress During Caregiving. Journaling to Track and Organize by

   Janine De Tillio Cammarata
   (Thanks, Janine!).

   1. Janine’s shared some prompts for journaling and generously shared an excel template of how she has tracked information. ‘This excel file is generic so you can input medications/doctors/hospital visits for yourself or anyone you’re caring for. Again, it’s what works for me’

2. There is no right or wrong way to track, monitor medications, appointments etc. It IS IMPORTANT to track things. Here’s a list of information points we track:

   1. Day, date, purpose of visit/consultation, doctor/medic’s name, questions going into the consult, potential outcomes/actions/tests, medications (brand name, the in brackets drug name), dosage (milligrams), formulation (patch, tablet, capsule, sublingual, liquid)

   2. Date of next appointment and follow-up checks

   3. Who will receive copies of letters / communications (so far there has only been a few letters that have been 100% correct).

   4. Summary of key information points, and any changes to current medications and tests with a view to sharing this with the other doctors.

3. Calandarpedia is a free resource. On the left you’ll see this view click on the format you prefer. I like to use a yearly calendar in Excel format. Click the hyperlink and scroll to the bottom of the page to see the different templates E.g. Template 7. The aligned days helps me to see where the monthly appointments fall

   

   

Eating and Drinking

1. A thermos cup

   1. a large grip handle, for those with arthritic gnarled hands, or who have difficulty gripping smooth cups/glasses

   2. slide-close, not a twist or difficult clip or knob. A Slide closure is easier for arthritic fingers

   3. a large stable base, to reduce spills

   4. not too tall - like a mug, to avoid knocking it over

2. A Push-Button top thermos (Similar to the one we purchased in 2016). I make 6-8 cups of tea with sugar and milk, fill up the flask and use this overnight instead of making single cups of tea. It stays hot for around 8-10 hours. I usually pour tea into the thermos cup.

   1. Beware if you have milk in the tea/coffee ensure you wash out the thermos everyday to avoid soured milk, or bacteria build up. Best option no milk

   2. Also really good for hot juices and squash e.g. Ribena or Robinsons orange.

3. Small travel kettle is a blessing if you need to quickly make a cup of tea for yourself or a loved one in their bedroom, in the middle of the night. When things are a little unstable, night times can be the most difficult. Sometimes, getting out of bed and having a warm drink can be worthwhile, to have a deeper sleep afterwards.

4. A Cool-bag is a low cost way of keeping water or other drinks cold in a bedroom. Or a little milk in a water bottle for the overnight cup of tea or ovaltine.

   1. On Amazon you can find small portable fridges that can keep things cold or warm. These can be used at home or on car journeys with the different cable power cables.

5. A transparent water bottle to measure fluid intake

6. Fortified drinks for when loved ones can’t eat much. They have a dense consistency but can work in a little porridge/cereal. e.g. Fortisips, Ensure, Nutricia’s Nutilis. They’re available on Amazon or ask your pharmacy.

7. Dense liquid honey is a great alternative to throat lozenges/cough sweets. A teaspoon is enough to coat the throat. Even after a drink of water, it still coats the throat and helps with a dry cough.

   1. If the person you're caring for dozes off to sleep with their mouth open, their throat dries quickly.

   2. Honey is sometimes better than lozenges/sweets to avoid a risk of choking when they fall asleep

Sitting Comfortably

1. Memory foam cushion with side-arms to keep it in a stable position and ‘hug’ at the hip-level. It comes vacuum-packed and tiny but plumps up to its huge size quickly, if you patiently agitate the foam inside. I bought the medium-firm support.

   

Gadgets and Innovations

1. A phone wallet case with an adjustable, cross-body carry-strap. This is such a handy buy (pun intended)! I don’t have to carry the phone around in my hand. It holds cards a few coins. If I didn’t have a huge number of keys a door key could fit in the snap-pocket.

   

   Black phone wallet case with a long adjustable strap, zip pocket and stud-close pocket, and magnetic close-clasp.

2. A grabber stick with a magnet and rotating end.

   1. This avoids the need to bend down to pick things up, i.e decreases the risk of a fall

   2. Helpful for pickup up keys that have landed in a tight spot.

3. A sock putter-oner. If you've ever pulled a back muscle, you know how difficult it can be to wear socks. This makes things much easier

4. Button hook: Small buttons on shirts and blouses can be tricky to fasten. This makes it easier

5. Amazon has a section called 'Mobility and Daily Living Aids'- it's classified under healthcare in the UK shop. If you look at the left column you'll see various subcategories of aids.

6. We used Ability Superstore(UK mobility aids)

   1. Ultimate Buying Guide for 2024 - Top 10 Mobility Aids (July 2 2024)

   2. Ultimate Buying Guide for 2024 - Top 10 Bathing Aids (June 13, 2024)

   3. Did you know that if you or the person you're caring for has a chronic long term condition or illness, your purchase is exempt from VAT in the UK? VAT Exemption

7. Keeping cool Battery operated handheld fans, Wooden fan or MENO COOL Scarf Cooling Gel Neck WRAP I bought two of these, and they work! :

   • The Meno Cool Scarf is a Simple & Natural but Effective Cooling Aid for Hot Flushes, Power Surges or Tropical Moments!

   • Completely Natural: The Process of Evaporation Means No Refrigeration Or Freezing is Required. When worn, the retained water in the crystal gel evaporates and draws away body heat from the carotid arteries.

   • Simple to Use: Just soak the scarf in water until the crystals have swelled completely, towel dry and use. Re-activate at any time by a short re-soak.

   • Dry Cooling Comfort: The special crystals in the back of the scarf when soaked in water expand and stay cold for up to two days without feeling wet.

8. Here’s an article of 10 Gifts for Chronically Ill People! A quick gift guide by

   Luna Rose Ferguson
   . Worthwhile browsing for ideas! Thanks Luna Rose.

Showering

1. Shower chairs and mobile aids

2. A neat idea is to put a bar of soap in a wash bag that acts like a loofah for exfoliation. An alternative to soap-on-a-string. This helps avoid accidents in the shower, from bending down to pick up the soap and falling over.

3. Some bottles of shower gel and shampoo are on hooks that can hang from rails, so that you don’t have to handle bottles.

4. Batiste Dry Shampoo, No Rinse Spray to Refresh Hair in Between Washes

5. Shampoo and conditioner Caps, No Water, no rinsing. 3 pk - Premium Rinse Free Shampoo Cap - Microwaveable with Conditioner & Vitamins, Nourish & Protect, No Water, No Parabens, Latex Free, Alcohol Free with 1 Pack of Limdo Gloves.

   These are easy ways to wash hair if someone has mobility issues, or dislikes lots of water. This is not the brand I used but it has better reviews!

   

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Sleeping

1. A V-shaped pillow is a good idea for anyone who is coughing or tends to cough. This could be due to some accumulation of fluid in the lungs, a chest infection, or oedema (fluid) due to impaired heart function.

   1. Normal pillows will slide apart if you put them in a V shape, or they may be too soft

   2. I used to bend the ends of the inverted V so it would sit more easily and added normal pillows to embrace Dad. He'd slide down a bit as he fell asleep, but this way, he could drift off to sleepinstead of coughing and fluid building up.

Here's a video. I didn't buy this but you can see how the end sections support and embrace the user. "The V Shaped Pillow is ideal to give you extra support when sitting up in bed or while sitting in a chair. With three individually filled sections, with extra support in the centre section, the V shaped Pillow provides support where you need it.  It can also be used on your lap for working, feeding your baby or reading."

10 Best Sleeping Upright Pillow In The UK published 12 July 2024I think the batwing pillow looks the most interesting as it has all round support. However, I've not purchased any of these. Take a look at the different types

2. For Sleeping, 55 inch Full Body Pillow Long Pillows for Sleeping, Maternity Body Pillows for adults with Cover Velvet

   Bed rails are important when someone is frail, prone to falls or is becoming delirious. (see home aids). If the person you care for is frail, needs some support full body pillows can be a comfort. It’s flexible enough to completely encircle someone, or be used in a V shape, or inverted to raise legs.

At Home safety

1. Resource/Tools: 'Home-aids' What's worked for us. Food for thought, not a promotion.

2. Handles and locks. A couple of times, just before he was diagnosed with vascular dementia, Dad went to the toilet on his own, locked himself in and couldn’t get out again. It was a scary hour or more, trying to cajole and encourage him to unlock the door. Soon after, we changed the bathroom locks and removed keys from doors. The bathroom locks look like the image below.

   This lock is a twist-turn knob on one side, and on the other side of the door is a grooved counterpart, that can be twisted using a coin. This facilitates privacy and the ability to open the door if needed. All our doors have lever-handles.

   

3. An old fashioned whistle on a string. It’s good on plane life jackets to call for attention AND at home! This worked with Dad, and I’ve given one to family friends where the wife was fainting and couldn’t get her husband’s attention downstairs.

4. Be safe lifting your loved one from seated position and around the house

In-Home camera

Here are three versions of in-home cameras

1. IPC360 is on Google Play OR IPC on Apple Store (UK) by Puwell Cloud Tech Ltd - I used this to check on my own apartment when I couldn’t be there most of the time. It could also be used to check on your loved one. You have an app on your mobile phone and can view the room. I used 2 cameras for the hallway-front door and the living room.

2. Ring doorbell and indoor home cameras and system. (UK, EU) I set this up in my parents home and as a motion sensor doorbell system. The cameras are effective. Bonus: when we had a visitor someone upstairs can hear/talk to someone at the door without moving. This also avoids the need to open the door to any stranger.

3. Amazon Echo Show 10 (newest model), HD smart display with premium sound, motion and Alexa, Charcoal (USA) AND Echo Show 10 (Newest gen) | HD smart display with motion and Alexa | Charcoal Fabric UK Version

   I’ve heard of this but not used it. It ties the camera with Alexa. I don’t have Alexa set up, it was too frustrating for my parents to use. However, this looks like a great option.

   christina moore
   shared her experience of using the Echo:

   We used the Echo a lot with my folks in very early pandemic when Dad didn’t want me in their home. Enabling “drop in” between my device and theirs allowed my to have video calls with Mom and reconnect a dropped call without her needing to do anything. It was a lifesaver for short calls when she was having a restless day and longer calls so Dad could do an errand or just to stay connected.

   Am has changed their privacy policy in US recently, which may affect user comfort level, but 4-5 years ago it helped SO much.

Outside, Away from Home

1. Wheelchair bags and pouches can be fixed at the back of the wheelchair. (e.g. Amazon). I prefer to use a small bag/backpack that I carry

2. Beware that you’ll need a waterproof poncho/blanket to cover the user and around the chair in the rain. Otherwise, the seat and their bottom will get wet. (A coat may not be big enough.)

3. Wheelchair 'Driving' and use Two videos that I found useful from the NHS (Leeds Teaching Hospitals NHS Trust)

If we were at a kerb with no ramp, I would go down backwards with the wheelchair to ensure there was no tipping forward in our Transit Wheelchair. I would go forward up the kerb.             

         

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Giving and Receiving Care. An Anthology