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Karin & David Henderson

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Maple Ridge, B.C.

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Chronic Illness - Meniere's Disease and The Family: Understanding It And Offering Some Support

One of the most rewarding careers in nursing has to be the job of the home support care team. It comes under many different names and formations, but basically it is a group of health care workers assigned to visit sick people in their own homes.

The reason can vary from someone not ill or infirm enough to be placed into a care facility, or someone newly diagnosed with a chronic illness, or someone just out of hospital to save facility costs, new baby, etc. The end result is that some form of nursing care has to be provided to this person. There are several benefits to providing the care in their homes.

The best one is that the nurse sees the "whole person". This makes assessment and teaching much easier. Nurses are trained to adapt their teaching TO the client: not to textbook care.

Here we see real life in action. And that is life surrounded by immediate and extended family members.

In a hospital setting, the client /patient will be in a very controlled / abnormal atmosphere…an almost sterile situation…johnny shirt with back flopping open, little or no privacy, dignity left at the hospital doors, family members are "visitors" and not always welcome (although this is changing.) The medical team is in control, the patient is seen as co-operative or difficult.

Things are done TO them, not with them. And I might add…at unusual times. Normal lifestyles are suspended: conformity is the expected. This is not a normal, but necessary environment. So it's desirable to have the patient return home as soon as possible.

At home, things will be more relaxed. The focus will be on integrating both their physical and emotional needs into their normal lifestyle. Here the "tables are turned" and control is back with the client, who may or may not want to do as the nurse advises: that is their choice. Care is always adjusted to create an atmosphere of understanding and co-operation. Sometimes this can be a real challenge. However, nurses are taught to be very observant and creative in ways that allow the client to resume a more healthy way to live.

When someone at home has a chronic condition that requires periodic nursing care, there are several issues involved. This may or may not include other members of the family, including children, plus the results of the actual illness. These can easily include the actual disability, anxiety about finances or job loss, family responsibility, motivation…or lack of, depression, possible drug interactions or dependencies, etc.

Some drug side effects may also result in paranoia. (Please consult with your pharmacist if you have the slightest concern.)

These not only influence the client, but also the caregiver and the children. Someone always ends up becoming the main caregiver: not by choice, but by default. So while the routine "life must go on" exists, life is never the same. Routines, which ensure stability and confidence, are changed and stress becomes a very real factor. Everyone's roles in the family dynamic are changed and the ripple effect is very upsetting. Most people don't know how to accept change easily, and this creates a crisis situation.

Everyone is on edge and feelings are raw. While the client has to go through the actual illness, and tries to find ways to cope with these problems, the rest of the family becomes frustrated and angry. In many cases, the client expects the other to accept the mood swings as normal and a right, which I think is unreasonable.

The term chronic implies something for a long time or without any letup of demands There may be little hope for improvement and that in itself requires some strong outside support. Often there is little sharing of the care load…for a number of reasons. People often avoid sick people: consequently there are few volunteers to help.

There is also additional workload from all the previous responsibilities, so fear, anxiety, and anger are present, but often hidden. This is a very difficult time of adjustment for the caregiver. And the rest of the family. Few of us are equipped to handle more than our own chosen load, let alone assume another's responsibilities, and then be cheerful and tolerant. The one person who APPEARS to be strong and caring will assume this role.

One of the most common situations arises in the elderly couple where one has the start of Dementia. The spouse may or may not seek help. If they do, the rest of the family often denies the problem: they refuse to consider the possibility. This caregiver then has an additional guilt load. They will subsequently isolate themselves even more. Often the sad end to this is the death of the caregiver from their own medical problems.

A major problem that I come across is guilt felt by the caregiver. When we discuss this, they are often very surprised that this is normal and shared by many others. That in itself, is often a huge de-stressor. Just being able to speak about their fears and perceived shortcomings, and abandoned hope for a more productive future, gives the caregiver some peace of mind. (There are organizations for caregivers by caregivers and your community groups will know how to contact them.) By opening up, they can learn different coping skills. It is important to remember that the caregiver also has rights: not just a lot of responsibilities.

It is normal to have feelings of frustration and total tiredness. Frequently, mealtimes and routines have had to be adjusted and often neglected. Rest for everyone is important.

Here are some suggestions that have worked. They won't all do in all situations, but they should start the thinking process. It is very important for caregivers to know they are not alone in their situation: that others have done it successfully and lived through the challenging times. Often just getting a few of them together or putting them in touch with each other, …with their permission, is enough to give them back control and their self worth.

  • The caregiver is NOT A SLAVE. They are a real human being who out of their generous heart, is caring for the client. It must be remembered also that they have feelings and a need for respect, nourishment, rest, etc.
  • It is important that some g round rules be established such as frequency, types, and times for care, and batching of activities. The client NEEDS to maintain some sort of independence, so they need to be encouraged to do some thing for themselves.
  • Some sort of agreement as to how requests are made ids crucial. Respect and politeness are still in order. I discourage bells except for specific needs…not for general purposes. Pavlov trained his dogs with it: we can create a lot of stress the same way.
  • Issues related to meals and nourishments reasonable and medical care and expectations, privacy and entertainment activities, for both the client and the caregiver need to be taken into consideration. Additional help may be needed at times.
  • Often the client is in no shape for long lectures or dissertations, but some form of agreement must be established.

It also has to be remembered that in many cases, children continue to need care despite one parent maybe needing special care. So the burden is heavy and difficult. There needs to be discussion with a group of support health and social service personnel that listen to both the caregiver and the client, and give appropriate suggestions.

In fact this discussion should be ongoing and start soon after recognizing that there are problems. One of the more common, but unhealthy behaviors is the mood swings that the client goes through, and the rest of the family is expected to accept this without question. Some types of behavior are unacceptable, no matter what the cause. Everyone must be treated with normal politeness and respect.

Another very important issue that has to dealt with is "time off" for the caregiver. And that is the responsibility of the family as a whole. No one should be expected to work 24 hours a day without adequate breaks. If another family member can't fill in, there are community facilities that might be able to find volunteers to sit with the client.

Some of the clients try to manipulate and control the caregiver in a couple of ways, because they seem themselves loosing control over their own lives. Two ways to achieve that is to threaten to "take them out of the will" or to report them the health or social service authorities about the perceived neglect.

If this is the case or a possibility, the best thing to do is to contact the nursing team. They need to know this and can help. It is also handy to keep a journal of activities. It doesn't have to be formal or elaborate: just notations. It will give anyone who id questioned, a very clear understanding of the daily events. In fact, journaling is very therapeutic.

Care for the caregiver should include calls and visits to friends and rest periods. This creates a much more relaxed and accepting atmosphere. Ongoing support by the visiting health team, the doctors, and pharmacist, is vital for the wellbeing of everyone.

Unfortunately, people get sick and some for a long time. It is important to remember that no one…client, caregiver, family, or support team wished for this situation. Communication with the outside world and living as normal a life as possible, with open discussion and fair treatment, is crucial. Probably one of the nicest and most appreciated surprises a caregiver could receive is the gift of rest and time to be alone.

 

We also have another article on the website that you may be interested in;

Coping With Meniere's Disease as a Family

 

By Karin Henderson - Nurse, Retired.

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Additional Information

 

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