CHALLENGES OF HOME-BASED CARE AND HOW TO OVERCOME THEM

The very last picture of ours together taken in April 2017.

Ira was given all care at home for 16 months after our initial stay at the hospital. During those months, we as a family, faced several challenges regarding daily care giving. These pointers may be useful for not only patients who have undergone critical surgeries or who are bedridden but also for elderly family members who require special care in some way.

Home-based care is basically provision of health services and care by formal or informal caregivers at home in order to promote, restore and maintain a person’s maximum level of comfort, function and health including care towards a dignified death (palliative care).

For us, providing utmost comfort, care and love to Ira meant everything and we did not have an external help in the form of a caregiver. However, in cases where this is not possible, the following tip-offs can be worked out together with the healthcare provider or nurse, the consulting doctor, the patient and the family.

SPASTICITY

Spasticity is derived from a Greek word ‘spasmos’ meaning ‘drawing’ or pulling’. In this condition certain muscles are constantly in a state of contraction, thereby causing stiffness or rigidity in the body (hypertonia). While spasticity is common in cerebral palsy and multiple sclerosis it can also be a result of damage or injury to the brain and/or spinal cord.

Ira was severely spastic, which increased with each passing day. It began with episodic rigidity or stiffness of her body and gradually she started to be in a continuous state of rigidity where her muscles from the throat to the feet tightened. Her body curved by itself into a convex shape like the alphabet C. Spasticity can be kept minimal or be avoided with physiotherapy and neurodevelopment therapy. Hence, patients with severe brain/spinal cord injury are started off on physiotherapy as soon as possible. For hours together I kept Ira on my lap so that she felt relieved with change in posture but that wasn’t a permanent solution. We did have to start with certain anti-spasticity medications.

EXERCISES / PHYSIOTHERAPY

Ira was on physiotherapy from day 1 of her hospitalization. Passive and active physiotherapy is very critical to recovery of patients in case of orthopaedic or neurological damage. Though Ira was given active physiotherapy (made to walk, stand and sit with support) it did not help build her reflexes and responses due to the extent of damage. I continued with passive exercises at home in consultation with her neurologist and the therapist at Cipla Palliative Care (CPC) to maintain the normal tone of her body.

All exercises should be recommended by a qualified doctor. It is not advisable to bend or stretch a part if it has lost its toning. For example, due to extreme spasticity Ira’s tendons and ligaments of the left knee were permanently damaged with slight hip dislocation. This meant that she could not bend her left leg in the knee and hip movement was restricted. In this case I only lightly massaged her feet and calves and did not attempt to bend her leg at all.

CONSTIPATION

This is a very common problem especially amongst elderly family members. Yet it is hardly talked about out of social awkwardness.

Though on a liquid diet, Ira suffered (really suffered) from constipation, most importantly because she was fed through a naso-gastric tube. Also, it is extremely difficult to empty your bowel while lying flat on your back. Here are some effective (tried and tested) remedies for this.

1. Suppository – A suppository is inserted into the anus which brings about peristaltic movements of the bowel. These are normally recommended for children. This should be used only under the supervision and advice of a doctor. Oral versions of such medicines are also available.
2. Laxative – Oral laxative syrups are available over the counter and may prove to be useful. Dosage should be confirmed with a doctor.
3. Aloe Vera – This is the best natural remedy that I have come across so far. Take aloe vera pulp from fresh leaves and grind a small quantity (1-2 tbsp) in regular foods like soup, dal, rice porridge, etc. It DOES NOT taste bitter.
4. Spinach – Green leafy vegetables are considered natural laxatives because they are rich in magnesium (Mg), which helps absorb water into the intestines. I added 3-4 leaves of freshly grown spinach leaves in Ira’s soup daily along with aloe vera pulp.
5. Peanut Butter – I was advised to put 2 tbsp of peanut butter in 1 glass of warm milk for effective results. However, I haven’t tried this as aloe vera worked wonders for Ira.

*Ira was on a combination of an oral laxative and natural remedies.

Caregivers find doing such private things extremely taxing – emotionally and physically, but it is important to remember that it is equally difficult, if not embarrassing, for the patient too. You need to be tolerant and uncomplaining in order to put everything at ease. Elderly people may not be able to empty their bowels daily for varied reasons. It is advisable to see a doctor if after 4-5 days the problem still persists.

HYGIENE

I don’t need to emphasize how important hygiene is to the health of everyone in the household. Here are a few practical tips that we followed around the house.

1. Cleaning the house is mandatory even in the case of sudden absence of the maid. You absolutely don’t need to invest in costly detergents and antiseptics for this! We tidied the house with our regular detergent and dettol or savlon.
2. Ira’s fowler bed was cleaned on alternate days and the sheets changed weekly. If you need to change the sheets more frequently please do so. Dirty sheets and air bed are the major causes of bed sores.
3. We changed Ira’s position frequently – from one lateral to the other, on the stomach and from one room to the other. This was easy since she could be carried around, otherwise lateral position changes should suffice.
4. Nobody should be allowed near the patient without thorough cleansing of hands and legs. Keeping a hand disinfectant (not a hand sanitizer!) may also help.
5. An often forgotten part of the house/room – curtains and windows need to be kept clean too. The mesh windows can especially be a source of dust and infections.

MEDICINES

Patients and elderly people are on many different type of medications. These medicines should be managed with utmost care and stored in the conditions prescribed.

1. We had a separate box holding all of Ira’s regular medicines, kept absolutely handy and within reach.
2. Depending on the frequency with which you need to restock the medicines ask your local chemist to home deliver or easy pick-ups. Since there were a few medications that I needed to restock bi-weekly we ordered online here. I had the medicines home delivered to save time and energy. I was also in regular touch with a local chemist for emergency medicines or when not available online. Since medicines account for major financial incurrence ask (shamelessly) for discounts.
3. All surgical items like gloves (1 box of non-sterile gloves and 2/3 pairs of sterile gloves), syringes, tubes, etc. were placed neatly in a separate box or drawer.
4. Timely reminders for appropriate medicines is also important in order to not miss a dose. I had laid down Ira’s medicines, timings and dosages on a white board kept in her room, so that any of the family members could administer the medicine in my absence too. You can also use a medicine box or Never-Forget-Your-Pill box easily available in offline and online stores.

DIET

Foremostly, whether through a nasogastric tube or not make sure the food is lukewarm and tasty. Plus every meal should be freshly made. I had followed a strict diet plan for Ira, made in consultation with a dietician, which included all regular foods. Following is the meal plan.

7:00     200 ml Milk + 1. 5 tsp sugar

10:00   200 ml Fruit juice (pomegranate/sweet lime) + 1.5 tsp sugar

13:00   200 ml Moong dal (not heavy to digest as compared to other lentils) + salt to taste

16:00   200 ml Soup (spinach/carrot/cabbage/beans/pumpkin) + salt to taste

19:00   200 ml Corn soup (boiled corns crushed and sieved) + 1 tsp sugar + salt to taste

22:00   200 ml Nachni/Jowar/Wheat (saute in ghee) porridge + jaggery + salt to taste

The diet plan that you see here was arrived at after many permutations and combinations. But this worked for her w.r.t nutrient intake and no-constipation. Since jaggery and salt were key components of her diet it was not required to give her any supplements for Iron, Potassium, Sodium and Vitamins. We also included coconut water in her diet, especially on days when she was intolerant to feeds.

Fresh spinach on our terrace.

SLEEP

Sleep many a times is difficult for patients and elderly members for varied reasons – discomfort, pain, change in circadian rhythms, etc. Under such circumstances it is ideal to hire external help for the night or family members can take turns. This was a major concern for me right from May to September 2017. Ira did not sleep well (due to neurological and respiratory reasons) and hence I lacked sleep, lost weight and became an irritant around the house for that while.

DO NOT give any medicines to induce sleep without the doctor’s advice. All you have to do is be patient, patient and more patient.

GROOMING

Body grooming is another overlooked area in home-care. Remember to keep the nails and hair short (as short as possible). Sponge or bathe every day. While sponging, sponge an area with wet cloth and then immediately dry it with a dry cloth to avoid cold. If it is possible try to bathe the patient or the elderly. Initially I sponged off Ira every day because I feared lifting her as if she were a new born baby. When I gathered up the courage, I started bathing her with lukewarm water and baby soap. It relaxed her muscles and she often slept well after her bath.

As opposed to calling a barber at home I cut Ira’s hair short (every 2-3 months) with a scissor and then trimmed them into an army cut. It took 2 of us to do that but I felt it hygienic and safe.

OTHER TIPS

Diapers and diaper rashes – Another major concern, I know! Ira had a major and major diaper rash while at the hospital, so much that she cried out in pain and her bum bled. I stopped using diapers and started her on cloth diapers like we do for all babies to avoid the rash ever again. We spent a fortune on underpads and absorbent sheets but it saved the pain.

This may not be possible for adults, in which case it is important to change diapers frequently. Clean private areas with wet wipes (avoid cotton). Use an anti-rash cream, but it may or may not work. Two remedies that worked miracles for Ira were:

1. Fresh cream or malai – I used fresh cream and applied it generously on her skin to ward off dryness and rashes.
2. Cavilon spray – This is used to reduce local skin complications as it forms a film over the affected area. However, it costs a bomb! But it did save our day. Nothing heals better and faster than this spray.

Every case is different and so are the challenges. I have listed a few general ones that I faced and tried to overcome. There may be more than one way of doing it right.

Have you faced any other challenges? How did you surpass them?