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Family Stories

Stories of caregiving are a way to learn how families have dealt with family caregiving situations that may be relevant to you. We also invite you to provide feedback about your own caregiving experience.

90th bday_0038.jpgChoose a topic to learn more about the experiences of family caregivers:

Lecture by Jill Taylor, Aspen Club Manager at University Health of Colorado's Poudre Valley Hospital

On Caregiving: Interviews with adult caregivers of family elders.

Living with a frail elder parent

Caring for an ill spouse

Long distance caregiving

Caring for a  family member who is in a care facility

Elders caring for adult children

Caring for parents who are still living in their own home

Caring for a parent who is dying

Living with dementia

 

Lecture by Jill Taylor, Aspen Club Manager at University Health of Colorado's Poudre Valley Hospital

Please watch this entertaining and informational 23 minute video by Jill Taylor, Aspen Club Manager at University Health of Colorado's Poudre Valley Hospital. She presented her entertaining lecture at the annual Elder Care Resource Day in March 2014.

On Caregiving: Interviews with adult caregivers of family elders.

This video was produced by the Larimer County Office on Aging in 2008. Some information regarding the Larimer County Caregiver Coalition may not be current. Contact Lynette McGowan at 970-498-7758 for more information.

Living with a frail elder parent

Soon after Mother died, my dad developed dementia. Realizing Dad needed round-the-clock care himself, I moved to the ranch where he lived in a remote mountain valley of Wyoming to become his full-time caregiver.  It took more than two years of constant attention to keep Dad safe and content. When finally, his dementia worsened to the point that Dad didn’t really know where he was, one night my brother Scott and I packed him into the car so we could go up to the cemetery and visit Mother’s grave. We took the long route, ending-up after 10 hours on the road, permanently in Fort Collins where we moved him into Scott's empty condominium.

Because Dad could present well long enough to pass any brief assessment,  efforts to get elder-care services and medical programs to help out such as assisted living facilities, Medicare, and hospice, were all denied. He was too functional. With no alternatives, I continued to be his primary caregiver. When Dad fell and had to be hospitalized, the need for someone to advocate for him became a priority. After being hospitalized, he qualified for services in the Poudre Valley Health System. With these services came another benefit: advocacy! A Godsend. When Dad returned to the condominium, he qualified for about three hours of Medicare home health care five days a week. Home health also helped get him on hospice care during the last months of his life. At last, we relaxed and just found a peaceful comfort in the final stages of dementia. We had wonderful help, thanks to the Larimer County’s community resources.

Shauna Murdock

Link to Family Stories and Discussions about this topic.

 

Caring for an ill spouse

Irene began suffering multiple serious effects of her diabetes, including some mild dementia,  in her early 70's.  By then she had been married 6 years to her third husband, Hank, who gradually took on more responsibility as her caregiver as her mental and physical status declined. During the first 6 years of their marriage Irene and Hank traveled around the country in their RV, played golf, and were generally active, independent, and happy, but as her disease progressed, their outside activities and their social interactions virtually ceased. Except for the occasional visit with Hank's only stepson's family, the two became isolated from the outside world. They lived in eastern Pennsylvania while each of Irene's three children lived hundreds of miles away.  Her children would travel to Pennsylvania several times a year to visit her, but Hank made it very clear that he was in charge of all decisions about her care.  He welcomed their visits, but wanted no interference in the routines he had established to get through the day.  When Irene's youngest daughter expressed concern to Hank about his impatience with her mother and her mother's isolation,  the heat and accusations of the ensuing argument resulted in her refusal to visit their home again until a week before Irene's death two years later. A year after that incident, Irene's oldest daughter suggested that respite day care might help take some of the pressure from Hank's 24/7 caregiving.  When she offered to accompany Hank and Irene to check out a nearby respite day care facility, Hank angrily confronted her for trying to interfere with his 'job'. After that all three children limited their communication to what was necessary to stay informed of Irene's condition. Hank loved Irene and cared for her as best he knew how, but his determination to go it alone created undue stress for both him and Irene and made no allowance for her children to participate in her care in any way.

Link to Family Stories and Discussions about this topic.

 

Long distance caregiving

I have two brothers, one who lives close to where our father lived in Florida and the other who lives in New Mexico. In the last three years of Dad’s life (he died at home at the age of 98), I served first as a long-distance caregiver, then more directly by staying with him for periods of time. As a long distance caregiver, I had no idea of the time and effort (especially time) that my local brother had spent so Dad could continue to live in his home of over forty years. By staying with Dad in that last year, my other brother and I were able to give my local brother a break. For me it was also a time spent just talking about things that we never brought up when we were younger. Dad was much more reflective and willing to discuss just about anything. That time with just the two of us came to be very special. However, I could also see how difficult it can be for long-term, full-time caregivers to find time for themselves. My two brothers and I were able to work together as a team to respond to Dad’s desire to die at home with his family present. It was not an easy thing to accomplish but was rewarding in many ways. I was very appreciative of the agencies (especially Hospice) and people who helped us, both directly and in terms of honoring our process.

Cherrie Thornton

Link to Family Stories and Discussions about this topic.

 

Caring for a family member who is in a care facility

By the time my curmudgeon father turned 80 he had been married and divorced three times, had a minimally cordial relationship with his children,  was living alone in a rural area of central Pennsylvania and had endured a year of chemotherapy and radiation treatment for lymphoma. His prognosis uncertain, he was very weak, in a lot of pain, nearly blind from cataracts and  concerned about living  with no help close by. A lifelong loner, he had no friends and  his three children lived states away. Ultimately I offered to bring him to Colorado where he could move into an assisted living facility and  I could help him manage his medical situation and living arrangements. His relief that he would not have to face the ordeal of his cancer alone was obvious. He lived almost exactly one year after moving to Colorado, but in that time he and I were able to work together to sort out his medical decisions  and in the process established a warm and mutually respectful relationship that I still hold in my heart.

As I look back, I appreciate the fact that my father, in spite of his stubborn independence, was clearly grateful for my time and effort and was willing to openly explore his options with me. He respected my busy schedule and did not ask for more than I had to give.  The assisted living provided good care  for his physical needs and took the burden of providing direct care from my shoulders. My brother, who lived in Wisconsin, provided support when I requested it, but did not second guess the decisions that my father and I made together. All these elements allowed me to enjoy my time with my father and to value the relationship we had in that last year of his life. All his adult life Dad was an extremely difficult man to deal with, but at the end of his life he was able to find the grace to accept the help he needed and to be grateful for it.  It made all the difference.

Bonnie Shetler

Link to Family Stories and Discussions about this topic.

 

Elders caring for an adult child

 

My 38-year-old daughter-in-law, Mary, was in a snowmobile accident in Wyoming approximately 10 years ago. This caused significant brain injury, requiring ongoing care. Mary is wheelchair bound; wears neck and leg braces and needs to be rotated frequently. She needs lots of assistance to be moved or lifted.  She is unable to speak and has poor short-term memory; however, she can communicate with me on paper. She understands her situation and has good long-term memory. As for her long-term prognosis, Mary is relatively healthy.

 

Mary was moved to Colorado in 2004 to a local nursing facility. I visited her about twice a year and then transferred here in 2008. After years of micromanaging the care that she did or did not get, I moved her to another facility.  I believe that she would benefit from more stimulation, more activities.  She receives weekly visits from someone who reads out loud to her.  Beyond that, she is often placed in front of the television, which she seems to enjoy. However, she has started pinching her aides when they assist her. When I remind that this is not ok, she agrees, but this behavior has continued.

I commute daily to Denver for work and then visit Mary every evening. Since I am relatively new to Colorado and work in Denver, I have had little time for social contact. My time is spent attending to Mary or shopping for her needs. She has very little communication with her family in New York. My son has moved on, remarried and has children. The primary responsibility for her well-being rests with me.

 

Link to Family Stories and Discussions about this topic.

Caring for Parents living in their own home

In 2003, my husband and I retired and moved to within 50 miles of my parents so we were able to help more at the end of my mother's battle with breast cancer, and the remainder of my father's life.  For a time after my mother died, my father was in good health and living independently in his home, but age and heart issues began to take their toll on him. My father was a very stubborn and pessimistic man so caring for him was difficult, and I found myself dreading the visits.  He was absolutely insistent on staying in his home, though he did miss the socialization that would have come if he would have moved to an independent living facility which I had suggested.   When he started relying to heavily on his sister for daily care, again my brother and I stepped in and insisted on outside help.  We hired a woman to come every morning to get him up and dressed and fix him breakfast, and used one of the non-medical agencies for someone to come in and provide the evening meal along with companionship.  It turned out to be a man who my father became very fond of.  They watched a lot of sports together and talked about cars, etc.  As my father's health deteriorated, we increased the amount of time he had help, and he was able to stay in his home until the end, using hospice for the last couple of months.

None of this was easy, as it takes an emotional toll.  I knew that I could not become the primary caregiver for either of my parents as it would have been too heavy of a toll on me and my marriage.  That certainly didn't mean that I didn't get involved or make more than one middle of the night trips when things turned bad.  Fortunately, my parents had the resources to pay for help, though it was a tough sell to get them to use it.  When my father began using outside help, I asked my brother to pay those expenses out of my mother's trust fund for which he was the executor, so that my father could not cancel them without notifying us.   My father was very alert mentally and knew the costs, but not having to write the check made it easier to swallow.    As I look back now there is little I would have changed in the type of caregiving we did for my parents.   I was able to have a very significant role in my parents last years and care,  and feel that the care they got was very good and allowed them to stay in the home that they had shared for over 60 years.  Compromises were made to keep us all safe and happy and I can look back at those decisions feeling that they were the right ones for us and our circumstances.

Carol Anderson

Link to Family Stories and Discussions about this topic.

 

Caring for a parent who is dying

My widowed mother was diagnosed with throat cancer four years prior to her death at age 73. She underwent several surgeries and numerous series of radiation and chemotherapy.   As food and entertaining was a huge part of her life, it seemed cruel when the mere act of eating became difficult. Following the throat surgeries, she was on a trachea and a stomach feeding tube. She developed thrush in her mouth. The radiation burned her throat and mouth so severely that even liquids were difficult to take in. Yet she managed her own care very well. When her body ultimately rejected any treatments, she finally allowed her family to care for her. Her last few months of life are really the only times she needed more help than she was able to provide herself. My adult daughter Amy and I cared for her, however we both worked and Amy had small children. We were able to phone Mom during the day, visit in person in the morning, at lunch, or in the evening to check on her. My brother and my husband would often provide transportation to her appointments, or simply go fetch something she requested.

I will never forget the morning her oncologist met with us for the last time. My brother, my husband and I sat with our mom as she was told “Bobbie, you are actively dying.” She stood up and said, “okay,” and walked out of the room.

We went home, made a plan of care for her. We also engaged Pathways Hospice at this time. Amy and I arranged a schedule to stay overnight each night. We asked my cousin and some of my mom’s friends to help during the day. Everyone was eager and willing, so the burden was shared. We simply made certain she was never alone. We had no idea how long this situation would last.  During this time her medications were difficult to manage. She was in significant pain. She became dehydrated and disoriented. She frequently needed to be hospitalized for hydration. Her temperature would spike without an identified source. She became incontinent and reluctantly wore diapers. She was very anxious and often agitated.  In spite of her occasional appetite, she could just barely sip water. Over the course of time we watched her body dwindle from a robust 160 pounds to a mere 80.

Once  her fever spiked to almost 105 degrees,  she was admitted to Pathways Hospice Acute Care Center at McKee Medical Center in Loveland where she was administered fluid hydration. Within 24 hours, it was determined her body rejected the attempt. She had also not taken food or water for several days. I met with the Hospice Medical Director who tactfully told me there was nothing more that could be done, other than to keep her comfortable.

Mom lived another four days. I believe she understood what was happening to her. She recognized each of us and was able to communicate with us somewhat. Finally, she shut down and peacefully died.

My biggest frustration throughout this journey was finding information and support. Finally, once Hospice  became involved with her care, I was able to step back and regain my role as daughter, rather than “nurse.” I have no medical skills and the care she required was beyond my skill set at times. I was uncomfortable administering the pain meds. And although I had learned to use her feeding tube, I never felt at ease with the process – administering the nutrition, the timeliness of it, and cleaning process. It was evident that she sensed my uneasiness. She relaxed when the hospice nurses did their work so effortlessly, rather than watch me stumble through it.

Watching my mother slowly die was extremely difficult for me, yet the time spent with her was rewarding. It was a challenge and a joy to care for my sweet mother. It was a gift.

 

Kathy Anderson

Mother: Barbara “Bobbie” Brooks

Died: August 4, 2004

Link to Family Stories and Discussions about this topic.

 

Living with Dementia

Seven years ago My wife of 36 years was diagnosed with Alzheimer's disease.  It was devastating to find out that, at the young age of 57, Karen  had a progressive illness for which there was no cure, only medications to slow the progress for a while.  In the beginning there was lots of depression on Karen's part.  Every time she 'forgot' or made errors cooking, or 'goofed' something up I spent time holding her in bed and consoling her.  I reminded her we were partners for life and I would always be here to make up for what she couldn't do.

We finally put her on antidepressants and the other Alzheimer's drugs recommended by our neurologist.  The antidepressants helped a lot and she seemed to handle her 'goofs' better and we learned to joke bout some of them.  The joking was always followed by a low point for me because every 'goof' was a sign to me she was getting worse and I was right in the middle of watching her change into a different person.  It frightened me at times and at other times she was still cute and still herself.

I'd say we managed fairly well the first four years, but slowly the burden on me became more severe.  It started with her crashing her car, after which she could no longer drive.  I had to take her everywhere or arrange for drivers …a new and often big inconvenience for me.  Amazingly I adapted and so did she.

By the fourth year she could no longer cook, do her hair, paint her nails, etc.  I started taking over most everything to make sure our life was fairly normal.  We still had family dinners that I prepared for and cooked, but I was starting to burn out and lose patience…it just wasn't the same without her there by my side getting things ready for turkey dinner.  I have since given up on this..too much stress.

The past three years have been the hardest on me.  In the beginning I was happy and hopeful a cure would be found before it was too late for Karen.  Now her Alzheimer's has progressed and I see no hope.  she seems very happy if her needs are met…and I sty to still do things that stimulate her because when I see her happy it make me happy.

Trouble is I am unhappy.  Not all the time, but a lot of the time.  I feel sorry for myself because I now have to do everything - and I mean everything. I never thought I could wipe my wife's butt, but I've done it.  Never thought I could scrub up diarrhea, but I've done it.  Never thought I'd see urine all over the floor because she couldn't make it to the bathroom.  I could go on and on.

The greatest thing however is that when I go to bed at night my wife of 43 years is still laying right beside me with our little dachshund right in the middle.  I want to keep my wife right here with me as long as possible, so, yes, I'll do the wash, dress her and buy her clothes.  I'll do her hair each day, put on her panties, bra, socks, and help her brush her teeth.  I admit I hired someone to come bathe her twice a week (couldn't deal with that), and, yes, I'll go to the grocery store and cook all the meals.  I have to have my housecleaning lady that comes every two weeks, however, or I would go nuts!!

Now the harsh reality.  If it ever becomes too much for me emotionally or financially I will have to do what I need to to qualify for medicaid and put Karen in a nursing home …. not that really scares me!!!.  

Larry McKelvey
Loving Husband

Link to Family Stories and Discussions about this topic.

 

 

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Anne B. Jorgensen
Anne B. Jorgensen
Jorgensen, Brownell & Pepin, P.C.
5285 McWhinney Blvd, Suite 100
Loveland, CO 80538
970-304-0075

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