As your parents get older, roles tend to get reversed. Instead of them taking care of you, you find yourself having to take care of them. My question is, where do you draw the line? Do you let caring for your aging parents interfere with your family, your job, your health? Just how much is too much?
Lucky for me, I haven't entirely been faced with this problem yet. My dad passed away several years ago after a long illness. My mom was able to care for him until a few months before he passed. When she became unable to care for him, she was forced to put him in a nursing home. We visited him regularly, but did not spend the majority of our time with him. We knew he was being well taken care of, so my family and I were free to carry on our lives instead of holding a bedside vigil.
My mom has told me for years, when she is unable to care for herself I am to put her in a nursing home. She does NOT want to be a burden on my brother or me and my family. I'm sure it will be hard on me when and if that time comes, but I know it is best for everyone involved.
Now for the flip side:
My friend Lucy, is married with a couple of children. At the time this all started, her parents Mr. and Mrs. B, were in their early 70's. Mrs. B passed away about a year ago after an extended illness. To strengthen my story, I'll have to start from the beginning, when Lucy's mother first became ill. It was several years ago, and Mrs. B was rushed to the Emergency Room with heart attack symptoms. She suffered a mild heart attack and a mild stroke. She also discovered that more than 50% of her heart was damaged. This was possibly due to previous light heart attacks she might have suffered. She was in the hospital for several days when her kidneys started failing. She was put on hemodialysis at the hospital.
When Mrs. B was finally released from the hopital, the doctors urged her to do peritoneal dialysis (at home), because her heart wasn't strong enough for hemodialysis. Members of the family and Mrs. B were invited to a informative session on peritoneal dialysis. They watched a video presentation on how to do "at home" dialysis. It seemed fairly simple and much less invasive than hemodialysis. They were told dialysis at home could be done while the patient slept.
If she chose hemodialysis: First, she would need to have surgery to gain access to the blood vessels in her arm for the dialysis machine. She already had a catheter inserted in her upper chest/neck that was for temporary dialysis. It would have to be removed because infection could set up easily. Second, the nearest clinic was 30-45 minutes away. Someone would need to drive her/pick her up from the clinic three times a week. Her husband, Mr. B could take her, but he was being extremely difficult and they couldn't guarantee he would take her OR pick her up. (He gets that way sometimes when he is not the center of attention.) Next, she would spend approximately four hours at the clinic hooked to a machine that would slowly remove her blood and clean it. Finally, she would travel the 30-45 minutes home. Since the blood is pumped out of the body and back in with this method, it is hard on your heart. There is the possibility of a drop in blood pressure that would need to be stabilized before the patient could leave the clinic. If the patient is on blood thinners, (which Mrs. B was) there is a possibility the clinic will have a hard time regulating the blood for the machine. It can be too thick or too thin. There is also the possibility the blood will not clot after the patient is taken off the machine. It could also clot too much and cause a stroke.
If she chose peritoneal dialysis: First, she would need to have surgery to place a catheter in her abdomen to make an access. This is the point where the dialysate (fluid) enters and exits the abdomen. Second, family members would need to get her bedroom ready for the supplies needed (an ample supply of dialysate, hand sanitizer and face masks) and make sure the environment is clean. Finally, After approximately two weeks of training, Mrs. B or anyone who took the training could perform peritoneal dialysis at home. It was as easy as attaching a bag of fluid to a rack, inserting a tube in the catheter, removing the tube from the catheter and disposing of the used fluid. After the bag of fluid drained into the abdomen, she would be able to carry on with her normal routine until it was time to drain the fluid. She could do this during the day or while she slept. The doctors determined the fluid would need to be in the abdomen for approximately 10 hours to be effective. They suggested she start the process before bed and when she woke up she would be free to carry on normal activities throughout the day.
Mrs. B decided at home dialysis would be the best for her. At first, her family was all for it. They knew her quality of life would be so much better than if she had to spend three days a week at a clinic. Then, something changed. I don't know if it was Lucy's idea or Mr. B's, but one or both of them convinced Mrs. B home dialysis was risky. The Doctors and dialysis nurses all said it was the best way for her to take dialysis, but Mr. B and Lucy just didn't think they could handle helping Mrs. B with it at home. They needed her to do the blood transfer at the clinic. When Lucy told me about the options, I thought it was a no-brainer. I would much rather have a fluid filled abdomen for several hours cleansing my blood than having my blood slowly removed from my body.
Now, Lucy not only had a husband and two children, she also had two jobs. She worked for a family friend, John and his wife, two or three days a week and her husband owned a small business where Lucy worked on her days off and did all the bookkeeping. When Lucy's mother first turned ill, she took many days off from both of her jobs to be with her. She stayed at the hospital day and night with Mrs. B until she was released, but did run home almost daily to shower and change clothes. It was approximately a 45 minute drive both ways. Both businesses had to make adjustments because of her absence.
Soon after Mrs. B made the decision to have the access put in and go to the clinic for dialysis, she had another spell and had to spend more time in the hospital. The access surgery would have to be postponed. Lucy again took off from work to be with her mother day and night. Mr. B would visit her for a couple hours a day, but not everyday.
The temporary access ended up being left in much longer than the doctors wanted. They were very worried infection would set in and Mrs. B would have more problems. Finally, after several months the access surgery was performed. Mrs. B was well enough to come home and dialysis three days a week started. Mr. B almost acted like he was scared of Mrs. B. He didn't want to drive her to dialysis. He didn't want to help her at home. Everything was left up to Lucy. Mrs. B was capable of walking to the bathroom, fixing herself a bite to eat, dressing herself, etc. She just couldn't do the cooking, cleaning and normal housework. She was just too weak from her ordeal. Cooking, cleaning, helping her in/out of the bath tub, taking her to dialysis, etc. was all left up to Lucy. Lucy had to take more days off from her jobs to care for her mother.
I could see Lucy's health suffering, her husband's business suffering and the family friend John was really being put in a bind over the entire situation. Lucy and her husband are not wealthy. John knew this and continued to pay Lucy even though she wouldn't come to work for weeks on end. Her husband's business was suffering because Lucy did almost all the ordering and all of the bookkeeping. Stock wasn't being ordered and bills weren't being paid. Every dime Lucy got was spent on gas and fast food going back and forth to the hospital. She also tried to take on the financial responsibility of paying for Mrs. B's medications and groceries. Let me add, Mr. and Mrs. B are not wealthy, but they had more than enough money to pay for medicine and groceries. Several times, Lucy went to John and asked for loans. John knew he would probably never get paid back, but he was very close to the family and wanted to help out.
This went on for almost 4 years. Mrs. B was in and out of the hospital because of complications from dialysis. Lucy was at the hospital more than she was at her job. One time when Mrs. B was released from the hospital, Lucy moved her into her house because she didn't think Mr. B could take good enough care of her. Mrs. B finally insisted Lucy let her go home. John never knew when she would come in and if she did come in, how long she would stay. John and his wife were extremely inconvenienced because of this. She was always making emergency runs to her mother's house or the hospital. Her husband's business was quickly going in the hole. There was no money to buy stock and if there's no stock, you can't make money. All of her credit cards were maxed out. She was unable to get a bank loan, because they were in default on their loan for their business and past due on their bills. At one point, she was so desperate she asked John to co-sign a loan for her. He did, but he had to end up paying off the loan himself.
At the end of about the third year, they lost their home and business because she shut everything out but her mother. Her husband had to look for another job. He was able to find some part-time work, but it still wasn't enough to cover their debt. All the while, John was still paying her. He started paying her a slightly reduced salary, but she still got paid. The relationship between John and Mr. and Mrs. B is why Lucy never lost her job and always got paid. Lucy, her husband and children had to move in with her husband's sister. She had lost her husband shortly before and was happy to have the company.
During the last year of Mrs. B's life, things seemed to level out. Lucy would take her and pick her up from dialysis on Monday's, Mr. B would take her and pick her up on Wednesday's. He would also take her on Friday's, but Mrs. B's sister would pick her up. Lucy was still doing all of the cooking and cleaning at her mother's house. Sometimes she would go in the early morning and not leave until late at night. Mrs. B would still have quite a bit of trouble at dialysis with excessive bleeding or her blood pressure dropping so Lucy would still leave work to make the occasional trip to the hospital, but now she was working more often than not.
Then Mrs. B was admitted to the hospital one last time. The dialysis had been extremely hard on her heart. The doctor's were amazed she had lived as long as she did. She was in the hospital with Lucy by her side for almost a week before she passed away. She suffered a massive stroke while in the hospital.
Now here it is, a year later and where is Lucy? Well, she and her husband still live with his sister. Their children are in college. Lucy and her husband are in their 50's and they have absolutely nothing to show for their life other than their two children and two vehicles. They lost everything they owned because Lucy took it upon herself to totally care for her mother. She still has her job with John and she is working regularly. Her husband now has three part time jobs. One of his jobs comes with insurance benefits and that helps their family quite a bit.
For all those years Mrs. B was sick, Lucy was told there was help out there for people in her mother's condition. There was a van that would take dialysis patients to the clinic three times a week. Lucy wouldn't hear of it. She could handle that no matter how much it put anyone out. There were ladies who could come in Mrs. B's house and cook and clean for her. It would cost money, but what else were they going to spend their money on? Remember, Mr. and Mrs. B had money. At times when it was hard for Mrs. B to care for herself and Mr. B didn't want to care for her, she could have been temporarily admitted to a nursing home until she was stronger. Lucy wouldn't even consider that option. Lucy didn't care that her world was falling down around her or didn't notice until it was too late. Her mother was her top priority above everything and everyone else. Her husband was suffering and she was hardly ever at home for her children. The teenage years are hard for children and Lucy missed four of them.
Now, after a year, it's starting again. Lucy's dad had to be admitted to the hospital a few weeks ago with heart problems. Lucy is not as fond of her father as she was her mother, but she still drops everything and runs to his side. It's like an addiction. She has to be there everytime a doctor or a nurse comes in. She has to know everything that is going on at all times with her dad.
Where do you draw the line? When do you finally say enough is enough? Never? Is it acceptable to lose your entire life while caring for your aging parents? Is that what we're meant to do? With all the services available to help us care for our parents, why should we have to carry all the burden? Maybe I should say, why do we CHOOSE to carry all the burden? Are we afraid we will be written out of the will? Is that what it comes down to? Or, do we just love our parents so much we feel no one can care for them like we can? These are the questions I need answers to. I feel you should love and respect your parents and do everything you can for them within reason. When you choose to leave the comfort and safety of their nest, then get married and start your own family, they should not remain your first priority. Your spouse should be your first priority, then your children. Everything else falls in behind.
Am I wrong?
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