My mother had diabetes, hypertension, dementia and Parkinsonism. She started suffering from these diseases at the age of 40 onwards. She died when she was 65, too early to leave this world. She did not die from lack of treatment or care; she just succumbed to the complications of her ailments.
It took me a long time to come to terms with my mother's death. I always think, did I do enough to properly take care of her? Was she comfortable? Did I give her enough time?
Today I will not be talking about these diseases, as a lot is written about them but I just want to talk about how to deal with these chronic diseases, not as a patient but as a family member or care giver.
In a modern day nuclear family we see both partners doing jobs besides raising a family and taking care of their parents. Our parents, our partners and our children are our responsibilities. Sometimes it becomes tough to keep track of all of them, so if a chronic disease affects any one of them, sometimes we may get lost trying to make all ends meet.
Any person who is suffering from a disease for a long time, which is not curable but can be controlled by medicine and lifestyle changes, is suffering from a chronic disease. Usually we find that these chronic problems start after the 40s. People above the age of 40 years are usually healthy looking, strong and doing some kind of job, either as an active homemaker or a service person. When diagnosed, we think they can take care of themselves and probably they can, but at times they may not. So it is good to keep track and also to contribute in taking care of them, even when the person is able to do it themselves.
First of all, I think it is very important for the patient and members of the immediate family to understand what is going on, what the disease is all about, what to expect and to know what needs to be done. After consulting a doctor, members should go home, sit together and talk about what to do.
All family members should be very supportive to the patient. Even in simple cases like diabetes or hypertension, the patient may feel depressed. These patients need changes in lifestyle and also discipline, which may not be easy to achieve. Sometimes we think how hard can taking some meds everyday be?
We must realise, it is hard as you have to be alert regarding the proper timing for taking the medication; it is nice if someone reminds them about it or simply enquires about it; it also makes the patient feel loved. Someone taking the responsibility of keeping track of the medications so that they can be restocked as soon as they are finished is a good idea.
Change of lifestyle is important. This means the daily routine has to be revised. Diets may need to change and it is convenient for the entire family to follow a healthy diet instead of making separate dishes. If the patient is diabetic, blood sugar should be monitored at least once a week. This can be done by the patient themselves using a glucometer. Anyone in the family can enquire about it from time to time. Same applies for hypertension patients.
People should also have a healthy exercise pattern. Walking is a very good and inexpensive way of exercising. Daily walks for half an hour every day is recommended. It is no fun to walk alone so accompanying the patient on their daily walk will encourage them. Not the same person has to do it every day. Different members can do it. This helps the patient to develop the routine and also it will be good for the caregiver. Patients who need physiotherapy need to have the facility available and maybe a person to accompany them. Taking adequate rest is very important especially for patients who are busy with their work and on the go most of the time. They have to be constantly reminded to slow down, to rest and to take it easy. A small vacation every few months is good. Just 2/3 days out is good to refuel anybody.
There are patients who had a stroke and some paralysis. They need a lot of mental support because they feel at a loss after the stroke or heart attack. The physician will take care of their medical wellbeing but family members have to boost their mental state. It is very easy for these people to get into a depression so try spending as much time with them as possible.
If the patient is elderly with memory problems like dementia, special care has to be taken to keep them safe and comfortable. It's good if they have people to talk to with whom they are familiar. Care should be taken so that they do not feel scared or neglected. Memory loss can be very scary and worrisome for an actively working person. They will need a lot of psychological support. At some stage, these patients will have mood swings and the caregiver has to invent ways to tackle these situations.
There are also patients who are suffering from diseases where they take meds regularly and these have side effects, which are not severe but are there on a day to day basis. Even a small thing as a rash can be bothersome on an everyday level. They must thus be dealt with a lot of patience and compassion.
The basic thing is to take care of your loved ones and make them as comfortable with their condition so that in no way do they feel like a burden. Taking care of a patient cannot be done by one person alone; all family members will need to participate. At times it can be very hard and frustrating for the caregiver that is when you need to take time out, and leave things to another person.
As days go by usually chronic diseases worsen and complications develop. In some cases special care is needed, nurses need to be hired, but make sure that family members are still in the picture, so the patient does not feel neglected or alone. One has to remember that this whole experience also affects the caregivers as they go through this and all members should talk about it from time to time.
You need to educate yourself of the disease process. We should think of it as a blessing as not everyone gets the opportunity to take care of a loved one.