Your Care: Your Story

(Editor's Note: In honor of family caregivers, Caregiving.com featured a special section on its site throughout the week of Thanksgiving: Five Days, Five Caregiving Stories. The five profiled family caregivers, who participated in online support groups sponsored by Caregiving.com, discuss their worries, their struggles, their battles—and their ability to overcome.)

Some stories are best told from the first-person perspective. So it is with Sue, who cared for her parents and now her husband (at one point, she cared for all three). In addition to sharing her story about caregiving, we asked Sue about her hobby, quilting. She’s in the midst of completing five quilts and excited about starting another. In the future, she also hopes to create a quilt made from her father’s ties.

Sue has a wonderful sense of humor, which you’ll appreciate as you read her words. You'll also appreciate a very honest look into life as a family caregiver.

Sue: I was my parents’ only child. My father was an Army Officer who retired as a Lt. Col. in 1956. Since we moved approximately every 18 months, my mom and dad and I were like the Three Musketeers. We were very close and, except for having problems adjusting to new schools (12 schools in 10 years), I can say that I had an ideal childhood. I always felt protected and loved and well cared for. My mother was a stay-at-home mom and, as far as I know, was happy in that role.

I was married in 1961 at the age of 19. My parents thoroughly enjoyed all three of their grandchildren. Things became somewhat strained with my mother as she got older. I always felt close to my Father and never felt judged by him. He loved me unconditionally--always.

Sue: My father had cancer surgery and was given four to six months to live in 1964. I stayed with my parents for a couple of weeks and helped as much as I could. My father recovered completely and lived a very healthy life for many, many years. My mother's health began to fail when she was in her early sixties. She had several non-life threatening surgeries over the next 10 years. I felt that she was trying to turn herself into an invalid. During this time I was still raising my children but helped as much as I could.

My caregiving began in earnest in the early '90's when my parents moved into a retirement complex about 25 miles away from where my husband and I live. Within a few months my mother became almost completely wheelchair bound. She was very demanding with my father and I.

A year or two after that she was diagnosed with Parkinson's Disease. I was working full-time during this period but would go and spend the night on a rollaway bed a couple of times a week so that my dad could get some rest. Finally, after Mother was hospitalized for severe stomach problems (she insisted on adjusting her meds to suit herself), I insisted that she be admitted to the nursing home section of their complex. I thought that the nursing home care would solve the problems but I was so very wrong. On most days and into most evenings, my father was down in the nursing home caring for my mother--at her insistence.

About six years ago he became very ill with a bad case of the flu. He continued to make the long walk to the nursing home to care for my mother until one day he collapsed in the hall. I was at work at the time but left and went to the facility as soon as I was called. My dad was in very bad shape and was taken to the hospital where he stayed for almost a week. I knew then that if I wanted my dad to survive, we were going to have to make other living arrangements for him and my mother.

After making some changes to our home, my husband and I moved my dad into our home and my mother into a nursing home about five miles away. Unless there was a special occasion or he was sick, my dad visited my mom every other day. I made the rule but I think that my Dad was relieved to be able to just sit in his chair and read his paper and not do anything that he didn't have to do. I was still working full time and my husband was working at night so things hummed along pretty well for a couple of years. Then came the changes…

My father began having problems with his balance and confusion; my husband began to have problems with his balance, with walking, with weight loss and with his vision. Both were having such significant problems that I began searching for a doctor and a diagnosis. At this time I hired my daughter to come in and take care of both of them while I worked. I took my husband, father and mother to as many of their doctor's appointments as was possible. My daughter did the rest.

After many false starts we found a doctor that said that my dad was suffering from Normal Pressure Hydrocephalus but that surgery could help. My husband was diagnosed with diabetes, macular degeneration and Progressive Supranuclear Palsy which is degenerative and fatal. I felt that I had fallen into a very deep hole but if I worked hard enough I could climb out and make everything OK.

During this time my mother's health continued to decline slowly but steadily. She required no more emergency trips to the hospital because her medications were handled by the nursing home staff. I visited her a few times a week and my daughter visited occasionally. My daughter continued to help her father and grandfather. I continued to work and continued to go further down into that dark hole.

In August of 2001, my dad had shunt surgery for his hydrocephalus. Then the nightmare began in earnest. The surgery that the neurosurgeon described as a "piece of cake" turned into three surgeries. I took time off from work and stayed in the hospital with him. He was restless, confused, thought that people were trying to do awful things to him--it was horrible. This surgery was followed by another surgery the next day and a third a week later. A few more hospitalizations followed and during that time I had words with several interns, residents, surgeons etc. The surgeon seemed to feel, "Oh well, he's old. What do you expect?". The interns and residents felt that if he knew his name and where he was that he was OK.

I lost it one day in the emergency room and screamed at a resident/intern/whatever: "Yes, he knows his name and where he is. But he also thinks he was in part responsible for the Terrorist Attack on the World Trade Center!" I finally got their attention although it did little good. When my dad was released after this third brain surgery, I was able to get him into the nursing home near my home where my mother lived.

I thought that after some recovery time and some physical therapy that he would be able to come home. Somewhere during that time I decided that I had to stop working or I was going to end up on the Psych Ward: I just couldn't do it any more.

In early January of that year my mother's health took a turn for the worse. She had been well enough to come home for Christmas with the family, as did my dad, but it was obvious that she wasn't doing well. She was hospitalized a couple of days after New Years. I left my daughter in charge of my husband and father and went to the hospital with my mom. Several days after she was admitted, she had an "awakening", and asked me what day it was. I told her that it was Wednesday and she very clearly said, "Oh, I have a hair appointment today!" I had to laugh because it was so typical of my mother. Earlier that day she also admonished me for always staying at the hospital with my father but not staying with her. This hurt me more than I can express and I told her that I hadn't left her since she had been admitted.

She began drifting off the following day and was discharged from the hospital the following Monday. I stayed with her in the nursing home until her death the following Friday. Her last words to me, when I told her that I loved her, were "I know." She would have been 85 in March.

It became evident to me not long after my mother's death that I wasn't going to be able to bring my dad home. He was no better after his surgeries. If anything he was worse, he fell easily, was confused and would wander in his confusion. The staff at the nursing home took wonderful care of my mother and provided the same for my dad.

I really felt that they loved them both. My father, who was a very "proper gentleman", would say some of the most outlandish things; at times he thought he was fighting the war and he would hold meetings with his imaginary staff. It broke my heart. In February of this year he began having seizures and I took him to the hospital where the residents, as usual, acted like it was all in everyone's imagination because AGAIN he knew his name and where he was...so he must be fine!

His confusion grew steadily worse; he fell and had to have stitches in his head. Not long after that he had another seizure and I again took him to the hospital. We spent another week in the hospital. He was constantly trying to get out of bed, at times he wouldn't/couldn't speak, becoming almost unresponsive. My daughter looked after her dad.

Eventually my dad was sent back to the nursing home. He gradually became more and more unresponsive and died on June 18, 2003.

Caregiving.com: You also worked while caring for your folks. How did you manage?

Caregiving.com: While caring for your parents, your husband was diagnosed. Did you feel that you couldn't get a break from bad news?...

Sue: During this time my son and my younger daughter had some significant problems in their lives and I really thought I would disappear into a dark hole of sadness. During the time that my three care recipients were alive, I was put on antidepressants by my family doctor. I don't think I would have made it if I hadn't had some medical help.

Sue: YES! I have days that I am so depressed and sad that I can hardly move. I just want to run away and never come back but then I know that I have responsibilities and I must take care of John to the best of my ability.

Sue: I have always felt that I should be able to manage everything but I know without a shadow of a doubt that I can't. Most of the time I feel that I fail miserably. I am impatient, I speak sharply to John, I could go on and on. I have never been good at caring for sick people other than my children and I HATE the "dirty work" involved in caregiving. I think that I am better at it now than I was but I will never be good at it...ever.

Caregiving.com: Losing your parents, understandably, has been very hard. In many ways, you haven't had time to just be sad about your parents because you’ve had to be there for John. What are your bad days like?

Sue: My bad days are a sea of sadness. On very bad days, I never manage to even get dressed. I do what I absolutely must and no more. I want to cry for my parents but can't, I want to not have to worry but I can't, I want to be by myself but I can't. I shudder when I hear John shuffling across the floor. I just want to be invisible.

Sue: I know that I must because there is no one else. I also have several very supportive friends, two of which have been caregivers so I know that they understand, at least to some extent.

Caregiving.com: You’ve been with the same online support group at Caregiving.com for four years. Do you remember what led you to try an online support group? And, what have been the benefits?

Sue: I have two grandchildren that were born at 32 weeks. The little girl, now 7-years-old, had and still has some problems. I was surfing the net looking for helpful information about premature babies when I stumbled across an online support group and I joined it. Although I didn't fit the group (they were all mothers not grandmothers) I got some really good information just by reading the posts. I started looking for a support group for caregivers and found this group.

This group has been a help to be because the members are people who are going through what I am going through. My friends have been there and done that but are now finished doing that. Even though they both had a rough time, it is over for them and they look at things through different eyes than someone who is going through it right now. I don't seem to be able to read as much as I used to nor do I write very often but I still feel that I need the group and read and write what I can.

Caregiving.com: Tell us about your quilting and about the break you took last month for the quilting event. Leaving for a weekend can bring such feelings of guilt, but you managed to go and enjoy yourself. Did you worry about leaving? If you did, how did you manage? How else do you take breaks from caregiving?

Sue: I have always enjoyed working with my hands. I have done needlework and sewed for my children all of my married life. I became interested in quilting when my children were still at home and took a few classes but never did much with it.

About a year ago, I was suddenly bitten by the bug again and took a quilting class. I have found it to be a wonderful release for me. It requires some concentration but not an enormous amount. It requires some skill and allows for some creativity, but if you stick to simple patterns not a lot of either. When I am quilting I am in another world.

In October a friend and I went to a Quilting Retreat and had a wonderful relaxing weekend. I didn't know until two days before I left if my oldest daughter would take care of her dad. Since he requires more care, she has been pulling away. Although I can understand her discomfort at providing personal care to her dad, I also knew that I needed to get away. After much going back and forth, I decided that I was going no matter what (I don't know if I would have actually left but I don't think so), that one of our children would have to step up to the plate and give me a break.

My daughter did eventually come and they got along fine. I kept my cell phone with me, much to the annoyance of the other women at the retreat, and we kept in touch several times a day so that I knew that things were OK. I am sure that the others at the retreat got annoyed when my cell rang but I just couldn't explain the situation to them because I didn't want to talk about it, I wanted to be away from it as much as possible.

I am now in the process of arranging with my father's trust officer for the trust to pay for respite care three or four times a year so that I can have a break. I am also looking forward to taking a trip with a friend in February. My husband will have to be in the nursing home near my home for about two weeks and I will do it even if I have to borrow the money to do it.

This is the third year that Wendy and I have traveled together and it has made a huge difference for me to have this long break. We are going to cruise the Eastern Caribbean: I can't wait! I only have to provide my spending money and for John's care. You couldn't get a better vacation than that.

Sue: I have thought seriously about getting some counseling to help me keep all this in perspective. One of my biggest fears is that when this is all over there will be nothing left of me. I don't want to be one of those bitter, complaining old women no one wants to be around. I want to be able to enjoy whatever time I have left on this earth, to spend time with my grandchildren and spend time with friends and just relax. I take a quilting class once a month and work hard to arrange things around being able to go to that.

I want to take care of John for as long as I can and I want him to be as comfortable as possible for as long as possible.

One release for both of us is our pets. We have three dogs and two cats. They provide us with a wonderful comic relief and a lot of comfort. They also keep John moving. He is still able to walk but does very little unless one of the dogs or cats wants out or in the house.

As John's health deteriorates, I will become more and more confined to the house. I am trying to maintain some interests such as our pets and my quilting and needlework and reading so that I will not be a complete recluse when, as a friend puts it, I get my walking papers.

Your Opinion: What make are the traits and characteristics of a successful family caregiver?

At least from my perspective, and a few others I've conversed with, humor!

Humor is the one thing that I've got that's kept this operation going for this long. Instead of crumbling under the stress of a potentially horrific situation, I'll deal with it, then in my own mind contemplate the humor of the whole thing.

Of course non-carers don't see it that way, but they're not up at the crack of dawn cleaning up ... things.

And there are days that it's just better to crumble, sweep up the mess and get on with it.

Determination, that one's been pushed pretty hard this last month, and this overwhelming sense of compassion. My mission is to keep my mother comfortable; in the physical sense, because I can't fix the impending outcome any more than I can answer questions that she asks.

One other one, and this too varies from caregiver to caregiver: Knowledge.

I'm an expert with Mom's issues just like everyone else is with their carer's as well. But holding an 'ace' is a very valuable thing--knowing what might enhance a specific type of treatment or having an idea of how things might present themselves.

But, it can also be dangerous because like people, there are very few commonalties between cancer patients, treatments and cancer.

Success is pretty much an individual definition. Mine continues to be keeping Mom comfortable, trying to find a little chink in the world that revolves around me, and dealing with the daily issues that orbit both of these issues.

The biggest success to date for me, is finding a method of pain control for Mom, because living life in pain isn't much of a life.

--Gretchen, who cares for her mom

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