The Secret Guilt of Caregivers

jatmy

over 2 years ago

My husband who will be 59 in October 2009 has been unable to work for the last 15 years due to his first +MI. Since then he has had two more MI'S, PulmonaryHypertension, Cardiac tampanode, COPD, Diabetes Militus-Insulin dependent, morbid obesity, utilitizates oxygen 24hours a day and bipap at night. He had a ruptured diverticulitis and has a colostomy, neuropathy of leg and feet, arthristis, has a torn rotator cuff of the right shoulder, can only transfer from bed to chair with assistance, is prone to GI bleeds, has renal calculi which he has been passing stones for the las 7 years from however the risk is to high for surgery, is becoming increasingly confused, falling when he tries to ambulate as he forgets about his disabilties and on and on it goes. As these problems have developed and worsend ove the last 10 years we have tried to adapt as each new symptom developes. I had been working fulltime as an LPN at our local hospital until a year ago when I fell and broke my left angle. I was on crutches for 3 months and then returned to work full time. In 4 weeks I fell again and had a fracture of my left ankle and compound fracture of left foot. They were unable to do surgery as I was caring for my husband at home still so was sent home with frx boot, crutches and non-weight bearing to left foot. Our daughter came home for a week, however she left her husband and 7 year old twins at home which is a 2 hour drive so she headed back for home. I am 57 years old which leaves us to young for many of the services available to either the younger or senior population. While I was off work with the 2nd fracture I developed neuropathy of both legs/feet, hypertension and depression. I have had a seizure disorder-etiology unknown since I was 6 years old. It is controlled with medications however I do not drive because of it and now that my husband is so sick he is unable to drive. I returned to work after 4 months during which time our hospital was taken over by another facilty with all new administration and many changes in personnel policies. I was called in for a meeting with my new supervisor who was not going to as lenient with me if I needed to leave because of my husbands declining health. My work records were always good and after working at this hospital for 32 years I had missed work for 6 weeks when I had my daughter 24 years ago, a total of 11 full days for my own illness at different times in those 32 years until I had fractured my ankles in the last year so I still had PTO hours which I had accumulated and not yet used all of them even with my time off over the last year. I was given the option of quitting on my own or being fired because of missing work and leaving at times for emergencies for husband which would result in any where from 30 mintues to the remainder of a day depending on his problem at the time. Now that neither of us are working I have reluctently tried to get assistance with some of the daily issuse which come in dealing with caring for my husband at home. I have never before asked for help because of my seizure disorder and the inability to drive from anyone except for family members. My husbands Dr's. are a 2 hour drive and his appointment becoming more frequent as he has become more ill. We live in a rural town with no intown transportation let alone long distance transportation to doctors or hospitals. It is almost to the place where I am going to have to place him in a nursing home to get the care he needs from his physicians. Both of us are becoming more depressed trying to figure out where to turn next. There are many agencies out there but our ages makes us to old or to young for most of these services. I have been told to go on medicare/medicaid, you have paid for it all these years so use it. We have always tried to plan for our older years and I really do not want to turn this all over in one lump sum and then have nothing to fall back on in later years. I feel we are the forgotten generation. I resent that they are making me beg for help when we have always tried to care for things ourselves.

sugarbay

over 2 years ago

Thanks for the reminder that guilt is normal. The older my mother gets, the more guilt I feel. I feel that I'm it and am in no way nearly enough but don't see a way to involve others at this time. It is true...It takes a village to raise a child and it takes a village to sustain an elder.

Spockula

over 2 years ago

It's still hard to pass off the guilt. Also, guilt goes w/ depression sx's, too. Again, the more you delegate, or get help....the easier life is, & guilt lessens.

PTCruzr

over 2 years ago

I thought this was very helpful...My sister and I are now dealing with this guilt. My mom lives with my sister (who works day, nights and weekends) and I take care of Mom when my sister cannot be there. I also do all doctor, hairdresser, eye doctor appointments, etc. If Mom wants to go out, I take her. But we recently had a weekend where both my sister and I wanted to have a break and you should have heard Mom. You girls don't love me anymore because you don't want me around....I'm telling you it was difficult!!! So thanks for the comments... Keep them coming