Homecare for bedridden family members

Delhi & NCR has a population of almost 2.5 million older persons (60+). In several surveys done across the area it has been found time and again that almost 4% of them are bed-ridden because of one reason or the other and require round the clock care. (In addition at any given point of time almost 5 to 6% of older population lives with the threat of ailments, which may render them bed-ridden). That would make that at least 1 lakh families are in need of such help in Delhi & NCR itself.

Agewell [http://www.agewellfoundation.org] a consortium of over 1500 NGOs and 6500 volunteers spread across 540 districts of India, committed to initiate better interaction between generations and extend a helping hand - has carried out a survey in Delhi & NCR to study and identify /understand the problems and status of Bedridden Patients living in Delhi & NCR. For the survey a representative sample of 1000 Bedridden Patients, caregivers and family members was interviewed spread across Delhi & NCR (600 from Delhi & 400 from NCR) conducted during the month of September 2009.. Direct in depth interviews were conducted by administering semi-structured schedules to collect information /impression from Bedridden Patients, their Care-givers and Family Members.

The findings are –

Percentage of bedridden men patients (67.5%) is higher than bedridden women patients (32.5%) among total bedridden patients of Delhi & NCR.

66.5% of the total bedridden patients were confined to bed for a short period (less than 12 months) while 33.5% of the total contacted bedridden patients were long-term patients.

Almost 76.5% were partially affected while 23.5% bedridden patients were severely affected.

Due to physical chronic illness, heart attacks or accidents more people remain in Bedridden condition. Almost 86.1% of all the respondents were affected by physical chronic illness, heart attacks or accidents

13.9% of the respondents approached by interviewers were affected by different kinds of mental/psychological problems.

When information collected from survey was analyzed, it was also found that older persons (60+) constitute major part of bedridden patients. Approx. 65% of the bedridden patients were reported from older persons category.

It was found that bedridden patients were facing different types of practical problems. Their major problems include non-availability of caregivers, depression/nervousness, cleanliness & hygiene, bedsores, high blood pressures, etc.

There were almost 30.6% bedridden patients, who have reported that they need caregivers urgently or who were found without any proper caregiver, in spite of the fact that they need care giving facility urgently.

Amongst Bedridden patients contacted by the survey team, almost 38% patients were taken care by their spouses, 23% by their family members and 39% by caregivers.

When respondents were asked about to prioritize the most effective health recovery techniques, almost 33% patients ranked Positive Attitude followed by Care-giving (25%).

Responses of persons interviewed on website of Agewell sums is all.

“She is alive and that’s about all. I am the one who is suffering. It is so difficult (to) look after a person like this. I feel like running away from all this.”
- Kavita Katyal

“No training of any kind is available for family members. It is essentially trial an (and) error… Doctors do tell us what to do but practically it’s a very difficult situation.”
- Mrs. Neerja Jhingan

“What do I do with him. He is my husband but I am now like a mother to him. He doesn’t speak … so I can only guess as to what he needs.”
- Mrs. Sharma

“I can do everything, but cleaning up several times a day… its too much.
– Mr. Kamal Khurana

“Changing a child’s nappy is OK… but you can’t even imaging (imagine) how repulsive it is to change an adult’s diaper…”

- Meenakshi Rao

The response of Meenakshi Rao left me wondering why is it so….mostly it is our parents we end caring for in such manner. And they have cared for us when we were in nappies…and we too have for our kids. Perhaps the answer lies in the fact that with kids we know its part of natural process and the child will eventually grow out of it. Plus there is joy of parenthood and the child’s smile. We are neither prepared for such care with an adult and nor know how long such helplessness would continue.

I totally support the conclusion of the study that since older persons constitute major part of bedridden patients, there is an urgent need to develop and strengthen volunteers’ network to take care of older persons. Being one of the affected parties, I fully agree that it is perhaps even more important to initiate training programs for affected family members/relatives of bedridden patients and even bedridden patients, so that they can get adequate knowledge and information on how to take care of persons confined to bed.

For some immediate relief I found some useful suggestions at http://www.uihealthcare.com/topics/generalhealth/ghea4572.html .

Change the bed sheets every 4 to 5 days and whenever they are soiled.

Use good support for the person's back. Lots of pillows are helpful if they are able to sit. Provide something to brace their feet so they do not slide down the bed.

If the patient is unable to move on his or her own, be sure to move them regularly. This is important for preventing bed sores, which are skin problems resulting from too much pressure being placed on the skin. The patient's healthcare provider will give special guidelines for patients who are at risk for bed sores.

Make mealtimes social, and feed the patient a balanced diet unless a special diet is needed. Give small frequent servings of food and plenty of fluids throughout the day unless instructed by the doctor to do otherwise.

Help the patient feel comfortable, clean, and safe. Eliminate boredom with radio, TV, reading materials, puzzles, visitors, or a computer.