Tuesday, February 5, 2013
On death and dying for a parent by a daughter.
My Mom turns 86 this March, if she makes it. She it totally disabled and has full time caregivers in her own place. You might remember another blog when I talked about moving her out of our family home and putting her in a rented apartment. She is going downhill and the dilemma is what do my sister and I do to help her in the process of dying. She can no longer see and cataract surgery is out of the question, so she only listens with her eyes in a blurry state. She seems to hear what she wants and ignores you, if not interested. She requests that my sister and I leave her alone when we visit, after 2 minutes. She wants to sleep and not be bothered. As my sister said to her doctor today, short of suffocating her what can we do? Kidding on the side of reality but not really considering it. He was shocked, as we all are, that my Mom is still living. Her doctor father had a heart attack at 32 and was dead at 42. He was told to go home and rest and wait to die. Instead he exercised and drank red wine. It kept him alive for 10 years, although he was unable to work. My mom was 19 when he died and she lived with a sick father for most of her life, that she remembered. She assumed she would die at 42 as well, but with modern medicine she didn't. She had a heart attack years ago and angioplasty years ago. Medicines have kept her going far past the time she imaged. About 10 years ago when my Dad died at the age of 77 my mom was already starting her downward decent. She had a business which she was no longer capable of running, so my sister and I closed it. For awhile she cared with what was going on as we liquidated her antique jewelry business but, after the death of my father she felt life was no longer viable. She signed a DNR but we never talked about what she wanted if she became incapacitated. On one hand she wanted to always live to be 100 but assuming she was in good health. Well, she isn't and it won't get better. She has many issues relating to enlarged ventricles with unknown etiology. When I go there she doesn't have any affect and will only talk when she feels like it which is almost never. Her eyelids are turning inside out on the lower lids and she is not a candidate for eye surgery. She can't eat unless fed now and she is placed on a toilet twice a week and given drugs to make her have a bowel movement. She is a wreck but outwardly she looks pretty damn good for 86. She was always a fashionista and has definitely been under the knife in her earlier days. The face, other than the eyes, still looks damn good. In fact, the only time she goes out is to have her nails done, hair colored and eyebrows waxed. Mostly, the caregivers take her out twice a week for lunch and the above accoutrements. Recently however she is getting very angry at her caregivers who have treated her so well and complains they are hurting her. The sad part is that it has become very difficult to clean her and brush her teeth and keep her from getting bedsores. Amazingly, she has never had one that has broken the skin. The caregivers take such great care of my Mom and we want them to stay until the end. The end will come but don't know when. She eats still when fed and since she is not moving at all and is totally unable to walk or move herself in the bed, her life has no quality. But, since it is not written down, my sister and I struggle with what to do. She is taking lots of meds which clearly keeps her alive. The doctor has finally offered, when we asked, to let us take her off of everything except one drug (to prevent edema) and gave us one new one for agitation and anger. We started today and it seems to help and can be used as needed. For pain he is willing to give us medication but it is highly constipating and that is not a good thing. She is not ready for hospice as she is still hungry in the morning and we have told her if she has had enough she can stop eating and we won't encourage the caregivers to offer food. All are very tough decisions which could be so much easier to make if when she was well and had told us what she wanted. She always wanted to be young at heart and I thinks she truly felt she would not grow old. Her generation lived in denial and lived their life in fantasy about death. I have lived the opposite preparing for my eventual death. My wishes are written out in very clear terms and my kids know what to do. I have felt like this from about 19 when I knew I wanted no extraordinary means to keep me alive under ever situation I could think of. I have backup people who will help me when I decide enough is enough. The problem is realizing when enough is enough. I hope I have covered everything as I would never live like my mother and either would she if she fully recognized what she is living. Dementia and Alzheimer's fools the person into believing they are doing things they are no longer capable of doing. For a long time she felt she could walk went she couldn't and felt she was still driving places herself when she had a driver. Then she thought she was actually preparing a Kardashian wedding. It is so sad to see my Mom like this. She was a powerful women most of her life, she ran her own business for 40 years and encouraged my sister and I to be our best selves. She changed from a 50's wife to her own person. She was always the best dressed in the room and worked so hard for my sister and I to be fashion forward and it so didn't work. She loved us the best she could and sometimes it worked and others it didn't. But both of us believe she should die with dignity and we are trying our best to give her last time on this earth a positive sendoff. Today she asked what was wrong with her and my sister explained she was older and her body and mind were not responding and that she was slowing down. She said she just wanted to go to sleep implying forever. We told her she is in charge now and doesn't have to do anything she doesn't want to do. We advised the caregivers to stop brushing her teeth if she doesn't want it and not dress her everyday to go out anymore if she doesn't want either. Abide by any wishes she has about everything. Just clean her only. So far today was a good day after she had her anti aggressive medicine. When she woke up she told my sister hello which was her first words of loveliness in a long time. We are trying our best.