My story began a long time ago. My whole life seemed to have been meant for being the one who takes care not the one who is taken care of.
My mother was ill for a big portion of my childhood. I was sent to stay with friends or relatives whenever she was in the hospital. As I grew up, my young life was centered around staying close to home in case my mother needed help with this thing or that thing. My friends would come over on a Saturday and wait while I did chores (cleaning an entire house, laundry, meals) and wonder why I had to do all these “grown up” things when they didn’t even have to put their own laundry away.
It was a lot of pressure on a teenager when Mom would say to me “you’ll always stay with Mommy and help me.” My mother was what I would classify as a high functioning invalid for many years.
Once I was in my twenties, she started deteriorating. She had many complications from Diabetes and heart disease. She had numerous serious infections and surgeries, including many amputations, one of which ended in an above knee amputation of her left leg. Once she was wheelchair bound, I was as much a prisoner of that chair as she was.
With the encouragement of friends, I got the courage to move out (though I stayed close to home) and try it on my own. Even when I moved out, I still went there every week to clean and gave her a hundred dollars a week to help with finances. I had a brother and sister but they didn’t do much. My father encouraged me to let go more and more and he somehow managed to take over my role as caregiver after about two years of my having moved out. He became the one to take her to all her appointments, (I still went along for the important ones), did her shopping and helped her start up a catering business and crafting hobby where she would sell tchotchkes and photo albums at local fairs.
Then she had a stroke. It all came crashing down. She was in Lenox Hill Hospital in Manhattan for two months. Then they moved her to an intense rehab place where she developed a seizure disorder, and from there my father managed to convince the PTs and OTs that she could live at home and we could take care of her. We did it for a year. Until I realized that my father was ready to commit murder. My mother was impossibly demanding and my sister and I worked full-time. We took turns every day bathing her, feeding her, changing her, to give my father relief because the aides were available for such a short time. There were times when I would just sleep at their house on the floor at the edge of my mother’s hospital bed because she managed to wear my father down and convince him to get her cigarettes and I was afraid she would burn the house down. My thirtieth birthday was spent fighting with my mother and father over her smoking and I walked out and didn’t go back for a month. That following January, she ended up in skilled nursing facility that was close to my parents home. She actually had a halfway decent life there. She was able to socialize and play bingo. My father went there every day (sometimes several times a day) and we made sure we saw her every chance we got. She passed about a year later. My father was there with her.
Jump ahead ten years and it was my father’s turn. He was a prostate cancer survivor. Very early detection and a complete prostatectomy right before my mother had her stroke. (At one point we had both parents in the hospital at once!) He was fine for a long time but after my mother’s death, my father stopped taking care of himself. He had diabetes, lung disease, and heart disease (two open heart surgeries and a pacemaker/defribulator) and many other minor ailments like crippling arthritis (three knee replacements and a disintegrating hip) and gout.
There were several close calls where my sister and I intervened and probably helped save his life (not trying to sound too heroic; I don’t feel like a hero) on a couple of occasions. The November before last, he started having issues and his PSA was elevated. I wondered how that could be since he had no prostate and was quickly informed that there is no other explanation than a recurrence of his cancer and the numbers were pretty elevated.
I set him up with the urologist but didn’t get far. They did several blind biopsies and could not locate the cancer. He could only have CT scans without contrast so there wasn’t much to find out from them. They knew he had cancer somewhere but could not find it. They said that there was such deterioration in his hips that there could be small mets in his bones that were not showing up. He also had elevated kidney functions. But the sonos of the kidneys showed nothing. The holidays came and everyone takes a break from everything.
My father was also a very stubborn man and didn’t want to be bothered. The last appointment we had was a bone scan right before Christmas eve. The follow ups were all scheduled for January but he had a really bad cold and was prone to congestive heart failure so we were dealing with that for most of January.
Then, on February 4, 2007, he had a heart attack and called 911 for himself. We didn’t even know where he was. He was very forgetful and forgot that he had our phone numbers and his medication list in his wallet. It took us about three hours and we found him in the ER. He just wanted to go home but they were insisting he stay. It all happened so quickly from there. A few tests, and send him to another hospital for a cardiac cath during which he had a mild stroke. That was my worst fear realized.
After surviving my mother’s stroke, I was terrified that that would be what would happen to him. Once I got over it, some decisions had to be made. He lived with my brother who is selfish and did nothing to help my father. On father’s day one year, I went over there to celebrate and my brother (who has a severe drug addiction) was on the couch and said my father was in the hospital…he dropped him off!!! and didn’t know what was wrong with him. We knew he could not be left with my brother. He was in the hospital and then was sent to a re-hab facility for another month. By March, he had come to live with me and my husband in our one bedroom garden apartment. We made up a nice room for him in our dining area. It was very cozy!
My father was so grateful to me but he needed constant care. We had therapists and aides at first but that all runs out very quickly. I changed my work hours and so did my husband and my sister so we could be with him. I would get up very early and shower and then make him breakfast and get him up and washed and do some exercises. Then I would go to work for six or eight hours (my workdays were formerly ten to twelve hour days). I worked weekends so my sister (who suffers from severe obesity) would take care of him on Saturday and Sunday. It was difficult because my father had no patience with my sister. She couldn’t jump up and help him the way I could so he would get mad. Whenever I got home he couldn’t say enough about how glad he was that I was home. I told him that my sister was doing her best and he had to be patient with her.
The nights were the hardest because he needed help getting in and out of bed and he urinated frequently but couldn’t get the urinal on his own in his weakened state.He was also very itchy and had trouble with his lungs and needed breathing treatments. I had to clean him after he went to the bathroom and I had to bathe him and wash his private areas. That was the hardest on both of us. I would just joke and act like it was no big deal but those were the times that I realized that this is it for the rest of our lives.
But we had our routine. We even managed to get him in and out of the house for doctor appointments and on several occasions, I took him around my complex in his wheelchair.
But he was losing his appetite and his kidneys were failing and his heart was so weak. He caught a cold in April of ’07 and I thought, this is it, here we go, the beginning of the end. He ended up in special care with congestive heart failure and was there for three weeks. The hospital staff was wonderful there! I really thought I was going to bring him home again. But he was so weakened from being in bed for three weeks and the social workers and the care plan managers wanted me to put him in skilled nursing. I refused. Then my sister said that it was too much on her and she couldn’t keep the pace that she had before so I had no choice. But, they put him in the re-hab section of a nursing home…ironically, the same nursing home that my mother was in. I was there every day since it was so close to home. By now he was so forgetful and I wanted to make sure he knew we were not abandoning him. My sister was there pretty often too. For most of spring ’07, he was in and out of the hospital with heart failure and kidney issues. By June, we started him on dialysis. In his own words, “That dialysis is no joke”!
I just realized how I am just running off at the fingers, right now. But I am so close to the end! I promise!
We actually had a decent summer when he wasn’t in the hospital. The biggest problem we had was a bout of scabies that he caught in ICU (we think!) and then a urinary infection which was causing him to have dementia-like symptoms. I fought with nurses and doctors and someone (a PT) finally said that that’s what she thought (urinary or bladder infection). Two weeks in ICU because of sepsis and he was ok after that. But he was constantly itchy and bloated from the fluid build up in his body! And he was always cold. How frustrating that this man, this kind of man, one who never wanted to be a burden on anybody and never wanted to intrude and told me “go home to your husband; you baby me more than you baby him” , this kind gentle but stubborn soul had to suffer all the indignities of a prolonged illness and then just to make it that much worse he has to suffer with itchiness that nothing will help!!! No lotions, no meds could give him relief. He scratched himself raw and bloody!!!!
Labor day weekend last year, I got a call that he was unresponsive and they called an ambulance. The nurse said she took his temp and it was 99. When I got there, I could see he was delirious and as soon as I got near him, I could feel he was burning up. The ER nurse told us that he spiked positive for every kind of infection they test for and that was why he was delirious. His fever was 105.6 and that was with him on cooling blanket! My poor father…he was always cold because of the kidney failure and now they had him on cooling blanket!!! I was already on a leave from work from the last time he was in the icu. So I was there all day every day until they kicked me out. The dialyzed him when they could. But sometimes his heart rate and pressure were too low. He never really woke up after that. He went peacefully with me and my sister by his side on September 18th of ’07.
The irony of it all is not lost on me. The dialysis kept him alive all that time and it was what caused the downhill slide…the access port for his dialysis got infected and he became septic. It was not the prostate cancer that killed him but his internists and infectious disease specialists said that his kidneys were definitely compromised by the prostate cancer because his PSA was above 30 in his last blood work.
Mine and my sister’s health both suffered after this ordeal. I already suffered with epstein-barre syndrome and had a serious bout of it this past winter. I was sick from Christmas right through February with flu and bronchitis and joint pain and elevated glucose levels. two stomach viruses. I realize that it was from running myself down and not eating the right foods. I have learned that it is just as important for a caregiver to be taken care of as it is for them to take care!!! It has taken me several months and a nice relaxing summer to get back to my old self. And my sister and I are both trying to get back on track with our weight and exercise!
I see that you are the kind of person that doesn’t eat when they are upset or stressed, but our family credo is “Feed a cold, gorge a crisis!” But I know that neither approach is the healthy approach. It is good when you can have hospice coming in and taking over when you need to rest. We did not have access to that. We could have had palliative care which is a step below hospice but I felt like that would have been giving in. In retrospect, I realize that I was trying to fight a battle that was not mine to win! It was his! I would have welcomed some relief. There were times when I left it to the staff at the nursing home but I felt that they didn’t get him clean enough or they let him sleep too much etc. It was a control thing. I think that what I have learned about being a caregiver is that I did not have to go it alone. Whether I hired someone to sit with him or taken them up on it when my closest friends said “Can I help?”, I should have taken those helping hands when the reached out to me.
Cindy E
Update: December 22, 2009
Wow! I just read that and it was like re-living everything! I barely even remember writing it!
Irony has reared its ugly head again. In a terrible twist of fate, my sister and I are once again caregivers…
My best friend was diagnosed with an extremely rare form of dementia called FTD or FTLD…Fronto-temporal-lobar dementia. She is 44 years old and has an 8 year old son! Her husband is beside himself with grief and anger.
My sister and I spend much of our off time at their house looking after Dianna and Christian while her husband is at work.
I took some time out of my day today (in spite of not being ready for Christmas) to read some of the other posts and I am so very grateful for this outlet…I will be needing it in the coming weeks/months/years…I am determined to make the most of every second I have left with my dear friend who helped me through every step of what I described above.
