These are just some of the many responses we received from our Editorial of 05/09/08 -
Guilt, No More
When have I felt caregiver guilt? My worst moment was telling myself I didn't want to be a caregiver before I volunteered for my father in law. The weight of moral guilt surprised me. I became a Parkinson's caregiver first to help the afflicted and encourage the healthy. My goals changed during my five years on the job.
How have I dealt with caregiver guilt? My own father was in the care of his second wife who did things differently than I would have. I was in my forties and respected their relationship. I offered help, not corrections. Of course she didn't need any help and I didn't do everything I thought I could have before he died, short of kidnapping him.
As my father-in-law's caregiver, I got a chance to make the corrections I missed with my own dad. And I left kidnapping on the table.
I have felt caregiver guilt for a little over two years and have not been able to resolve it. I have almost had a nervous breakdown. After one of mother's falls and while in the hospital, a hospitalist got her mixed up with a heart patient and quadrupled her BP meds from 80 mg. to 320 mg., put her on two other meds she was not supposed to be put on and took her off her circulation medicine. She was transferred to a Transitional Care Center for 20 days for physical and occupational therapy, and she kept getting weaker and weaker. No one had the power of attorney for health care at the time, so I got an attorney and mother agreed to give that to myself and my husband. That's when we got her medical records and found out about the mix up of patients. We spoke with an attorney and he would not take the case. Anyway when she was discharged on March 1, 2006 from the Transitional Care Center to my home, I checked her BP and heart rate before her bedtime that night and both were so low, I called 911 and she was taken back to the hospital. That's when the hospitalist admitted the mistake and apologized, but that didn't help mother.
I have suffered from guilt from day one, as two days before she fell the last time, the Home Health Care agency had spoken with mother's primary care physician regarding the fact mother wasn't sleeping very much. The PCP prescribed Ambient in the lowest dose to be taken at night. That was the second night mother had taken the medicine. I had lost so much sleep in the past three months that I had taken care of her, that somehow that night I went off to sleep and mother got up over the end of the bed and somehow fell getting to the potty chair. (All the other nights she had called me and I had gotten up to help her, but if she called that night, I didn't hear her). The first thing I heard was a thud and I rush to her room and she was in the floor groaning and trying to move. I called 911 immediately.
She was never able to come back to my house or her home. I live everyday with the guilt of having listened to her PCP and gave her the sleeping pill. If I had not given it to her, she may have not slept well, but might still be able to stay with me.
Mother can no longer speak or communicate except through giggles, smiles or an occasional nodding yes or no to a question. Most of the time she just looks at us. She can no longer feed herself and has to be fed pureed foods and thickening liquids, due to swallowing problems. My husband and I have gone to the nursing home every day for a little over two years, except one week when we were sick, and I feed Mom every night. We usually stay from 4 p.m. until about 6:30 or 7 p.m each night. You might ask why we go every day. She would not get fed if we didn't. Other families have told us that she often does not get fed at lunch if she is sleeping or if they don't have enough workers, so I could not let her go without getting fed at night.
I cry almost every day and suffer from severe depression due to this. My health has deteriorated these past two years. I have almost had a nervous breakdown because of the guilt that I can't let go of. I don't know how. I have no one other family to help me. I have a sister who is disabled and a niece who refuses to help. But they both know how to criticize me for placing Mom in a nursing home. They keep saying if I hadn't placed her there, there would have been more money out of her place when she dies. I think Mom and Dad worked hard for what they had and it should go for mother's care and not to us, but they don't see it that way.
It seems all my friends have deserted me since I can no longer go places with them or talk with them. They never call anymore. I feel so alone. My husband and I both are so exhausted that we can do nothing but go to the nursing home and flop down when we get home. My mother is 87, I am 68 and my husband is 65.
Where does a person turn at a time like this? We used to be regular church goers, but due to health problems we cannot go on Sunday mornings and we can never get away from the nursing home in time for Sunday night services.
I visit a psychiatrist every week, but that's the only outlet I have to talk to anyone.
Please forgive me for rambling on, but thanks for listening. Please pray for us.
After 8 years of taking care of both of my parents by myself, I had a stroke on April 9th of this year. I was very blessed that it was not a damaging one beyond some mobility and leg strength issues, but it meant my caregiving days were over. The doctor said if I went back to full-time, around-the-clock caregiving, I would likely predecease my 86- and 89-year old parents. So my parents had to quickly be put into a group home so that when I was discharged from the hospital, I could come back to their home to rest. (I had lived in their home to care for them.) My father is on hospice for leukemia, and has been perilously close to death 4 times in the last 2 years (we call him Lazarus now! :-) ) and to move him away from his home, away from the comfort and care of my caregiving, produced such massive guilt I could hardly stand it. I knew the group home would just let him languish in bed, where I had gone out of my way to get him up and dressed and out into the world, and to have visitors come to see him and to enjoy baseball games on TV.
I contacted a counselor who helped me see that I had given them EIGHT YEARS of the best, most loving care I could give them, even at the expense of my own health. And she pointed out that as much as they may not like it there, they would like it even less if I was institutionalized somewhere with a massive stroke, or dead because of the caregiving I did for them. That helped to ease the guilt a little, and though I struggle with it still, there's more I find to be grateful for than to beat myself up for. I kept them in their home for 8 years.......I kept them healthy and even prolonged my father's life because of my diligence in his care......I managed their finances so that they didn't have to touch their annuities (which are just now being tapped for income to pay the group home).......and I made sure their care was advocated with insurance companies and doctors and all manner of other people in the healthcare system. I kept their home clean, their clothes clean and pressed, their meals made from scratch most nights, and their lives engaged in the world around them. I did this for eight years. And that's a lot I can be grateful for........because I AM grateful that I was given the chance to do this for them....I'm sad it wasn't to the end of their lives, but I am grateful it was for as long as it was.
Gratitude keeps me from sinking to the depths of despair over the guilt.......and it also helps me put everything into perspective.