Care for the CareGiver

What do you CareGivers do, to prevent your stress factors and personal frustrations from coming out against a patient?

1. Both CareGiver and patient need to acknowledge that it can be a frustrating situation for both of them
2. Caregiving can be exhausting, both physically and especially mentally. Some PWPs have difficulty communicating and its surprising how much additional mental effort is required on behalf of the CareGiver.
3. Especially when significant mental effort is involved, it is important for the CareGiver to have frequent, short breaks. 5 mins every 30 mins or maybe more. A "break" may be as simple as "Go and make a cup of tea" or it could be "Sit down and watch TV"
4. The patient has lost control of their life due to their illness. One way of compensating for this is to get the CareGiver to do things. This leads to loss of control for the CareGiver. A balance needs to be found.

I think CareGiving is a "skill", and there's probably a degree of skill to being a Patient. Good, open, honest communication is a good start, and a sense of humour is absolutely vital.

Someone at some point should write a book about how to be a CareGiver. Ho Hum.

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The most important thing to understand is that, whatever is happening, it is not under your father's control. He is ill, demented. You and your mother should try to change your perspective if possible - the problem is not your father - the problem is your father's illness. If he could, he would behave, cooperate and be his old loving self. He can't, he is sick. His illness has affected his brain to the point that he has decreasing control over his own behavior and bodily functions. He is not to be blamed, scolded, rejected. Do your best to care for him with love.

Caring for him will be frustrating, and anger provoking, and sometimes even physically impossible. When things reach this stage, families may need outside help beyond what the neurologist is able to do in the office by adjusting medications. You may need a sitter at home; you may need a nurse; or you may need to consider placing him in an extended care facility. The choice often depends upon the desires of the family and the financial resources and insurance available.

It is important to care for the CareGiver. Your mom needs all the help and emotional support she can get. Some of that care may be providing her some "respite" on a regular basis - in which she is able to leave the home and have some entertainment of substance - without worrying about your father, or taking him with her.

Ultimately, she needs help making decisions for the long term care of your dad. She may need counseling to help her deal with her anger and guilt feelings. It is very likely that the neurologists office can refer her to appropriate social services to help her plan - but she will need the support of the family for the decisions she needs to make - such as placing your father in a nursing home. Remember and remind her that if the current situation persists, it threatens HER health too.

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