Caregiver Stories

The following are true stories sent in by today's caregivers.

1/18/04

My mother was diagnosed with Alzheimer's about 2 years ago. When my father passed away in 1999 from lung cancer, he told me on his deathbed, "something is wrong with your mother" and was afraid to die because he was so worried about her. I took his hand and whispered, "it's ok dad, I will take care of mom." He died a few hours later. Of course, I had no idea what was wrong with our mother and no idea what the cards held for me in the future as her caregiver.

Now, almost 5 years later, I continue to live with and care for my mother who is entering the late stages of Alzheimer's disease. I now find myself on a roller coaster ride of emotions each day coupled with many sleepless nights. Luckily, my father had the foresight to invest his savings and to purchase long-term-care insurance for her several years back. So while money is not an issue for me yet regarding her care, my own sanity and health are issues I am fighting to maintain during this very difficult time.

Recently married, I am a 46-year-old woman with a doctor's degree in chiropractic. I invested much of my time and money into my education over the last several years (I am what some would consider to be a late bloomer) and then met and married a wonderful guy after I graduated from chiropractic school. But caring for my mother has forced me to put my career on the back burner and I find myself giving my mother more attention than I give to my new husband. All of this often devastates me emotionally and often makes me feel resentful and short-changed. I have two older brothers who live too far away to help and I feel as though the weight of the whole world is on my shoulders much of the time. I bounce back and forth between compassion for my sick mother and times when I wish God would take her so that we could all feel better (including my mother). Then, of course, I feel guilty for feeling that way.

I have hired caregivers to help me so that I can begin to get on with my life more or less. And that has been very helpful in alleviating some of my stress. The biggest problem I'm dealing with now is sleepless nights because the disease has advanced and my mother can no longer sleep at night like a normal person does. So I am up a lot to make sure that she doesn't fall (which she has in the past) and hurt herself. So my next step is to either hire a nighttime caregiver to stay up with her so we can sleep, or to place her in a home. The thought of placing her in a home rips my heart open and I feel racked with guilt at the thought. But I know that I cannot go on without getting sufficient sleep because ultimately, I will be the one who becomes ill. So I am currently working on resolving this problem.

On the upside (yes, there is an upside to caregiving) I feel blessed to be able to share the days with her that she has left here. My mother was a very loving, giving wife and mother, a wonderful parent and example for me. So it feels good to give back to her and share moments that I would not be able to share with her if she didn't live with me. I still get to experience the pieces of "my mom" that are left from time to time, the moments when she looks at me and tells me that I'm her sweet little girl, the moments when she remembers me and we laugh together.

Kathy
kderosa@hotmail.com

1/13/04

For close to ten years I was my mom's primary caregiver. I was single and lived at home with my mom and my single brother. He paid the bills but didn't do much to help with her physical care. Not only did she have a number of medical problems but she was also suffering with severe depression. Living with a severely depressed person is a trial.

I did her physical care, took care of her medications, took her to her appointments (which caused no end of hassles at work), took care of her when she was in the hospital (I had 2 1/2 years of nurses' training), did the cooking, cleaning, laundry, took her places, etc.

When I fell in love with a man from Maryland and wanted to get married and move, my mom was a handful! She told me "I would rather see you in a coffin than in a wedding dress." Tom took over her care. I stopped hearing from them a week before my wedding. My Mom died less than a year later, having been in and out of geriatric psychiatric units, nursing homes and an assisted living facility. My brother did all that he could, visiting her every evening and bringing her home when he could. I knew nothing of this until my brother called me at work and said "mom's dying."
She died before my husband and I could drive the 500 miles home.

I moved in with my husband and his then 78-year-old father. Dad has end stage emphysema and is on oxygen 24/7. He spent most of June in and out of the hospital. We make sure that he eats well, takes his medications,sees the doctor, etc. I now realize that I have to keep any additional medication out of sight. He was on an antibiotic, one a day for 10 days. He was supposed to let me give him one at bedtime. He went through 10 pills in three days. He told me "I took my pill."

So here I am, back in a caregiver position. I love my father-in-law but sometimes it feels like "out of the frying pan, into the fire." I remember my mom saying "You won't take care of me but you will go down there and take care of his father." Guilt!

Now two single sisters-in-law, and their two cats are living with us. One sister-in-law has multiple medical problems. Need I say more?

Both my husband and I are on medication for anxiety and depression. He is 50 and I am 48, no children. We've been married for a little over three years. During that time I was estranged from my family, my mom died, we have both been unemployed, there have been injuries, accidents surgeries, and therapy.

I was laid up from August until recently with plantar fascitis in both feet. Bedridden, in a wheelchair and big, bulky splints, therapy, medications....now I am back in shoes and can walk. As soon as I could be in shoes and up and around my father-in-law started asking me when I was going to work.

I got the clearance from the specialist last week and have been job hunting ever since. If my feet hold up, at least I will be out of the house and away from the stress. My husband, unfortunately, has a disability in his back and can't find work.

I am sure that many of you would gladly trade places with me. You are a caregiver out of love and necessity. It is not an easy task. God bless all of you and give you strength, renewed love and the patience of a legion of saints!

Sheila Stunkard
thenubble03@yahoo.com

1/9/04

Hi, my name is Brenda and I am taking care of my parents here in California. I have been here about a year now. When I first came they were having trouble making ends meet. Mom had cancer of the lung. She is 74 years old. She had surgery early in 03. The doctors say they got it all. Dad is 77 years old. They cannot be left alone, so I moved down from Portland, Oregon so they wouldn't have to go to a home. I just moved a small trailer on to their land next to theirs with an intercom in between. This seems to work out well. Please understand, my husband and I love each other very much but he is stuck up in Portland, Oregon in a job at the United States Post Office. And he is taking care of his mother who is almost 90 years old so she won't have to go to a home. There are lots of other problems, but this is just a start! Thanks for letting me ramble!

Brenda Redfern
bfr@elite.net

1/7/04

My mother is 85 years old and independent. The twist here is that she has cared for my sister, who was born with Downs Syndrome, since she was born 46 years ago. My sister was diagnosed with Alzheimer's a year and a half ago and way beyond what my mother can handle. We have been trying to get her into a nursing home with little luck. All have year-long or longer waiting lists. I'm worried that my mother will die trying to care for her much longer. My mother would like to go into assisted living but she cannot until my sister is situated. I need help. Thanks for listening to my story.

Linda Sellmer
lindasell@mindspring.com

1/5/04

My father recently died. He was in a nursing home. I feel extremely guilty having placed him there. I take care of my mom who has Alzheimer's, and has had several mild strokes this past year. I have lived with my mom for about 6 years. She was diagnosed with Alzheimer's about 2 years ago. She has become incontinent and is nearly wheel-chair bound. She has to be assisted in all of her daily living areas. I have just very recently asked for help, and have hired a CNA for Monday, Wednesday, and Friday from 1-5pm. This will enable me to be able to keep my shop open.

Some days I am very tired physically and mentally.
I feel guilty even when I am sewing or at my computer. I have her in bed at these times, so I try to get some time to do a few things for myself. My main guilt is, of course, that I placed my dad in a nursing home, and he did eventually die there. I wish I had it to do over again. I would try to have him at home along with my mom.

However I know the realities, I am not Super Woman. I just miss him so much, and feel so guilty that he died in a nursing home, and not at home with me where I could have been with him to the very end. His roommate had died about 2 months earlier, so he died alone in his room at the nursing home. I had just been to see him, and had a very good visit with him. However that does not make this PAIN in my heart go away. I feel as if my sole has a deep black hole residing in it. I try to keep up my spirits for my mom's sake, but I am constantly reminded of him, and I feel so sad that I will never see him again. I am a believer, and pray daily that I will see him again in a heavenly form.

Maybe someone out there has a simi liar story, as I am sure there is someone. I suppose I am looking for some magical words to make me feel better. Thanks for listening to my story.

Nanci Cox
nonya.dance@wcc.net

1/1/04

Hello everyone. I will start by telling you how I became a caregiver. On January 27, 1997, I was at the county sheriff's home for his birthday party.

I started getting pages on my pager. I thought they were a from a friend out of the county because of the prefix and was not going to call someone long distance from someone's home. I was only at the party for about 35 to 40 minutes and left and stopped at another friend's home.

on the way home another page came in from a friend that was local and he had 911 at the end of the phone number. I called him and he told me to call the number that I had received earlier right away, that something bad had happened and it was my neighbor calling from his cell phone. So I called and got the shock of my life. My neighbor, whose name is Ed, said someone here needs to talk to you. He put on a Florida highway patrol officer. We spoke a few minutes. I have known this officer for many years he asked me if there was someone there to drive me to the hospital and I told him there was. He asked to speak to them. It was my girlfriend he spoke to. She gave me the phone back and I asked him what was going on. Then the ball was dropped. My Dad had been in a fatal accident.

So my girlfriend drove me to the hospital. We were sent to the ER where a nurse and a different FHP officer took me in this little room and I was told my Dad was in surgery. I said I was told he had passed away. The trooper there told me that they had my Dad covered up on the side of the road when the rescue got there. He had no heart rate. One of rescue workers knew him from coming to the house and that he was diabetic. He gave him a shot of glycogen and got a heart rate. My Dad's blood sugar had dropped and someone called the FHP saying a drunk was running people off the road, but before they could get to my Dad, he hit a car head on. Both cars were going about 45 miles an hour. My Dad was thrown from his truck and a truck behind him ran over him. He broke both arms, pelvis both legs and had a severe head injury. He was in surgery to put his foot back together, which as nearly cut off. He was in surgery only about 45 minutes before they had to stop and take him to ICU because his vital signs were dropping.

My Dad weighed 175 at that time. They let me go see him in ICU that night. I told the nurse that was not my Dad. He looked like he weighed 700 pounds. He was in ICU for 10 weeks, then moved to a regular room for a week and then was taken to a rehab unit. He ended up losing his leg where his foot was so bad. He was in rehab for 7 months. After 6 months at home, he is doing well with a walker to get around and we find out he has prostate cancer. He goes through treatment and did very well. This was in 1999. In 2002, they found colon cancer. He went through surgery for that, but did not want chemo. The cancer was in the lymph nodes and has now spread to the liver. I take my Dad to all doctor appointments, fix him three meals a day and snacks in between, take blood sugars and give all meds. I buy any thing he needs, take him out to friends and so on. At this time he is in rehab. He just got out of the hospital. His big toe got infected but the doctor said he was not getting good blood supply to his foot, so the doctor took an artery from his upper leg and put it in his lower leg. He has been in rehab for a little over a week now. I brought him home for Christmas, just for 4 hours, though, because they are giving him IV antibiotics.
The nursing facility he is in is doing a good job with him, but you know how that is they can never do as well as you would like.

Caregiving is not a fun thing. It is harder than most jobs people have in everyday life to see one of your loved ones go downhill is very depressing. I just think that we caregivers will be repaid in a different way down the road. I got married in 1998 to a wonderful woman that understands why I do what I do. She never got a honeymoon, but maybe one of these days. I don't leave my dad alone over 2 hours at a time do to his blood sugars, which can drop for no reason. Let's all hold are heads high! I will say a prayer For all caregivers.

WILLiam R. Headley
killroys@aol.com

1/1/04

In 1994, I married a wonderful man. He was estranged from his father, who left his life when my husband was only 5 years old. My husband was raised by his mother and a wonderful step-dad, and had only occasional visits and phone calls with his dad.

Fast forward to 2002. My husband called his dad on Father's Day, and they had a long conversation. (Dad had remarried a woman with four daughters, but she passed away in 1991.) The daughters were grown with familes of their own, and dad was living alone. My husband suspected dad wasn't doing so well. Being 1,300 miles away, he decided to call his step-sisters (who lived near dad) to check up on him. At Christmastime, my husband decided to fly out and visit dad. His concerns were realized. Dad was not caring for himself. He refused to allow "outsiders" in to help care for him, so my husband's step-sisters pitched in ... a little. In the meantime, my husband and I began to discuss moving (from NY to MN) to take care of him.

By June 2003, we had begun packing and preparing to give up our careers. Bad new arrived by a phone call. Dad had fallen and broken several ribs. After his hospital stay, he was transferred to a nursing home to recuperate.

On July 15th, my husband received a call from one of the step-sisters. The nursing home had exhausted dad's insurance benefits and stated, "If a family member did not come take him home within 48 hours, they would attach his assets." Despite the fact that he and I had never met, I agreed to fly out the next day. I never knew what "for better. for worse" was going to cost me.

Dad was so sick, he was only home 4 days before I put him in the hospital. He was diagnosed with pneumonia, but he also has Alzheimer's, diabetes, hypertension, chonic heart failure, renal insufficiency, osteoathritis (severely limiting his mobility), glaucoma and urinary incontinence from the complications of surviving prostate cancer. To say that I did not know what I was in for is a serious understatement.

Had I not come as quickly as I did, I'm certain we'd have been coming out for a funeral within a matter of weeks. The only blessing to be found in dad's needing to go to the hospital was that his house was so dirty, I was grateful to be able to clean without having to provide care too.

Dad came home from the hospital in mid-August, and if my husband hadn't arrived (with a U-haul full of our belongings) in early September, I think I would have gone crazy.

So now, my husband has found a job while I stay home and take care of dad. Changing diapers, giving medications, cooking, cleaning, and sleeping with a monitor in case dad wakes up - that's my life now. I used to have a good job, a car and an active social life ... that's all 1,300 miles away. If not for church, the only time I'd see other people is at the grocery store.

In our favor, Dad is personable and social. His quality of life has improved 1000 percent. He and my husband are very grateful for my ability to adapt and respond to this situation, and I thank God that I was able to make such a difference in dad's life. However, I'm lonely and homesick. Twenty-four-hour supervision sometimes seems like a prison sentence. Even when my husband can take over (evenings and weekends), I feel trapped here. It's getting better, but oh, so slowly. Dad is now going to daycare 3 days a week, 7 hours a day. I'm so not used to being so broke that I've been looking for part-time work, but I haven't found anything lucrative enough to be worth the effort.

My heart goes out to my fellow caregivers. The stories given here testify that so many have it worse than I do. So many are caring for ungrateful family members, and/or having to fight with other family members over care issues. I appreciate the opportunity this site provides to commune and commiserate.

Lisa Littlejohn
lisalittlejohn@webtv.ne
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