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The situation with my Mom is very difficult. I love her dearly and she is now going through a very painful stage. Her health is deteriorating and her Alzheimer’s disease is progressing. The periods of lucidity or logic are getting shorter and far in between. The memory loss of short term events is complete. She needs something, and even though she has just had it, she forgets and needs it again. She is now completely bedridden because she complains of all sorts of pain if she sits for a bit. She needs constant 24/7 attention. So she is forever ringing her bell. The rate is once every ten minutes, during the day and once every two hours at night. This is exhausting physically and enervating emotionally. Last night was an example of how bad it could get. The pain was so great we were up since 2 a.m. Trying to make her comfortable. The removal of the catheter did not seem to make any difference, she still felt it was there. At 5 a.m. had to give her the only pain killer I had at home which the doctor had warned me against, but her pain was so great, I had to relieve it somehow. At 6 she fell asleep and I could go back to bed. This morning I called the doctor to take her back to hospital, but he said there was no need, just to increase the dose of the pain killer!
Anywhere in the civilized world you would find a support group for those who are primary care-givers to Alzheimer’s patients, but here we have family and friends. These can be life savers, but sometimes can add to the burden.
The one thing a primary care-giver often needs besides sleep, is an understanding listener when they need to vent. In such cases the worst thing that could be said to a primary care-giver when venting is to remind them that this parent they are giving care to had previously taken care of them as children. It is not that you OWE them that you are doing what you are doing, it is because you love them and want to help them as much as possible. So this concept that as their child it is your DUTY is extremely offensive and when proffered in a tone of advice and condescension, becomes extremely irritating and could be quite offensive. So instead of helping, you are adding to the very heavy burden already carried by the care-giver.
Another rather common reaction to an exhausted venting care-giver, is to tell them that their reward in heaven is great. It is a miracle that the response to such insensitivity is not a physical blow. Who does such work with the idea of a reward if it was not a hired professional? If it is a family member, it is done out of love, so the idea of a reward, and that what is being done is for a personal gain, even though it is in the after-life, is extremely offensive as well.
What a care-giver needs is an intelligent listener, someone who does not judge or give advice, someone who shows sympathy without being patronizing, and who, when appropriate, cheers the frustrated, exhausted care-giver through either changing the subject when they have exhausted their venting, or by trying to bring a little cheer with plans for future little treats. An offer of help would be appreciated but can never be accepted as there is nothing a non-professional can do in such a situation.
I have been through all the above and I can tell you that sometimes those most concerned in attempting to be helpful are the ones who have added to my burden most. A high degree of sensitivity to the very delicate balance of nerves and physical exhaustion undergone by the care-giver needs to be practiced. No hint of blame, even in the form of advice as to a better way of doing things, should be offered. The guilt already felt is bad enough, you do not need to add to it. Whatever is being done is never enough, and for someone outside this situation to give advice, could be just the straw that breaks the camel’s back.
The care-giver needs recuperation, needs time off to re-charge the batteries, needs a break to be able to come back and face the intolerable with fortitude. So the worst thing you can do is be insensitive enough to wonder how they could leave the patient and go out to lunch. That “lunch” is the needed therapy for the care giver. That piece of music being listened to, or the book being read is the only thing standing between them and a breakdown. So instead of being judgmental, have some intelligent empathy that would go a long way towards lightening the burden of an already tortured soul. Sensitivity in dealing with people carrying such heavy burdens goes a long way in alleviating such weight. It is also what kindness is all about. It is a form of love as preached by all religions, to help the needy, be it by a kind word, an understanding smile, or just by listening without judgement.
I must say that I have found a few such lovely people who have helped a great deal by just being there, trying to help in any way they can, by not judging or giving advice, by being loving friends. God bless each and every one of them.
22 Jan. 2014