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Lutheran Family Services of Virginia > Caregivers share their experiences you can too

Below you will meet Vickie, Judy, Dave and Norris, who are currently caregivers or who have had recent past experiences with caregiving. All four offer their reflections on the world of caregiving in the posts that follow.

VickieVickie is a long-distance caregiver who lives in northern Virginia. She helped her father take care of her mother, who began showing signs of Alzheimer’s in 2004 and died from the disease at age 82 in 2012.  In 2010 her parents moved to Southwest Virginia from Tennessee, close enough for Vickie to more easily split her time between her home and her parents’ home.

judyJudy has a sister in Texas who is sole caregiver of her mother, who has Alzheimer’s. Her sister also home-schools her seven children. Judy’s mother wanders during the nighttime making it difficult for her sister to get adequate sleep. Judy feels that it is hard to give her sister the support she needs.

NorrisNorris is a retired surgeon who was the primary caregiver for his wife of 38 years, who died in 2010. His wife was his surgical nurse. He struggled to get her the medical care that she needed, and is continuing to cope with the grief of her death.

 

David R Phelps 11272011

Dave was the primary caregiver for his mother, a fiercely independent woman who died in 2009 at the age of 96. He is now caring for his wife who was diagnosed with stage 4 lung cancer in April 2012.

 

What was the hardest thing about caregiving?

Vickie:

It is difficult to live well and fully in two different places, and you have an ever-present anxiety that you are not available to provide on-site help if an emergency were to occur. You must anticipate, plan ahead, and outsource for help when you see that it will be needed. It is also so very important to build good relationships with all the people that help care for your loved one. The quality of care is directly related to the bond of a strong team effort.

Judy:

Not seeing and experiencing the situation for myself. Having to view everything through my sister’s filter. Not being close enough to help out my sister in my mother’s care and the guilt that comes with that.

Norris:

Three things are extremely hard: 1) Watching my wife lose all of the abilities and talents that she had and losing her ability to know me and eventually losing her own identity. Along with that having to review all of this with the visits to the University; 2) Being unable to accomplish anything in the way of improvement or cure along the way in spite of contact with the university; 3) Near the end listening to her repeat many times a day, “All I can do is sit and wait to die. Why doesn’t someone do something about it?” Hallucinations are very difficult to deal with, and it would be nice to know more about coping with them.

Dave:

For me the hardest thing about caregiving is patience. “Situations” never, realistically, resolve themselves quickly. They have to play out in their own time. I am, by training and nature, a “study, analyze, determine a course of action, and carry it out” person. In a caregiving situation, you don’t have that luxury. The person being cared for has his or her own pace, and your own may or may not mesh well with theirs. But, you have to recognize that YOU can change YOUR pace far easier than they can change theirs. So, you must be patient and adapt. That, for me, has been the hardest thing.

Has this affected your own family life? Your extended family relationships?

Vickie:

Becoming a caregiver affects every aspect of your life and every member of your family. It is so very essential that every family member accept the changed circumstances that caregiving brings. Extended family relationships/friendships probably suffer the most because so often your own resources are depleted after taking care of the care receiver and your own immediate family.

Judy:

Not really, except for the sadness that comes with my mother’s declining health. How can I say that?!  My father died very unexpectedly last summer of a heart attack, and I feel certain it’s from the stress he experienced day in and day out in caring for mother. My sister and her family were a huge help but I don’t think he really felt he had choices. I wish I’d realized how much he was hurting.

Norris:

My wife was the glue that held the family together, and the closeness that was present with her alive and well is gone.

Dave:

When I was part of the caregiving for my Mother, no, I do not believe it affected family life or friendships. My wife was highly supportive and was also a part of the team helping my Mother. Because I insisted that “I had to have a life” (something my Mother did not necessarily accept all that gracefully), it did not affect friendships.
Now that I am part of caregiving for my wife in her illness, the effect on family life is primarily that there are things she can no longer physically do, so I must. However, within those limitations, family life is as close to normal as feasible. Friendships are actually strengthened because of the wonderful “family” feeling within the neighborhood and church community. This is very gratifying.

Is there a difference between caregiving for a parent versus a spouse?

Dave:

Yes, and it’s the role reversal.  Growing up, our parents took care of us.  Now, we must take care of the parent(s). That has tremendous psychological implications. In caregiving for a spouse, we pledged at marriage to care for each other, and have done so. When you grow old together — a wonderful experience for the most part — you recognize that the time will come when one of you must care for the other.  In a situation where the parent is the care recipient, that role reversal may come suddenly.

What surprised you about caregiving?

Vickie:

I really had no idea the toll it took on a person, both emotionally and physically.

Judy:

I did help care for my grandmother and great-grandmother when they lived with my parents. I would stay with them from time to time to allow my parents to get away. In my mother’s household, there really wasn’t time in the day to take a shower.  In addition to the two women she was caring for, she insisted on maintaining a menagerie of animals that required daily care. Her life as a caregiver was all-consuming. I hope I would simplify my life were I in the same situation.

Norris:

It all seemed natural, and what I was supposed to do and made our love stronger. Two became one.

Dave:

The biggest surprise was how mentally fatiguing it turned out to be. Even when you are away from the one for whom you are part of the caregiving team, there is the mental stress of “the phone may ring at any moment and Mom will be demanding something.”  I truly was not prepared for that mental stress.

Why did you come to a caregiving support group?

Vickie:

I became a caregiver partner with my Dad when my Mom became ill. We both learned as we went along, and we had each other to lean on when times were especially difficult. When that time comes for my Dad, I want to be as prepared as possible.

Judy:

I want to have a better understanding of what my sister’s life is probably like and find ways to support her emotionally. I’m also a member of an Alzheimer’s support group.

Norris:

To perhaps learn what maybe I should have had some knowledge of before or during the 12 years.

Dave:

I had been part of the caregiving team for my Mother, and “flew on instinct” for the most part. When my wife came down with her illness, and I began to gain weight because of overeating to compensate for the stress, I knew I needed help.

How has it helped you?

Vickie:

The class provided structure and organization to a challenge that faces most of us at some point in our life. The lecture material is a valuable resource, and the class discussion is really meaningful because you hear your own story told through different circumstances and lenses and realize that you are far from alone in the universe of caregivers.

Judy:

It achieved my goal of learning more about caregiving. I should be able to relate better to my sister.

Norris:

I’ve become aware of many things but don’t necessarily see where any of it would have helped particularly with the exception of Hospice, which I learned about very late.

Dave:

Even more than the course material, which is excellent (most of it is pretty common sense, but the stress of a caregiving situation sometimes inhibits our ability to use our common sense!), the intangible feeling of support from those who have gone or are going through similar situations is very reassuring.

What wisdom can you share with people who find themselves in a similar position?

Vickie:

  • Trust your faith. God is with you on this journey.
  • Find a way to take care of yourself.
  • Anticipate and arrange for outside help when you need it.
  • Have an emergency back-up person who can step in if something happens to you.
  • Keep a journal. Amid the exhaustion and frustration will be moments of clarity and love to be cherished and remembered.

Judy:

Work hard to keep lines of communications open with other family members. My sister and I had a falling out after Daddy’s death and we didn’t speak for about five months.  It weighed on me all the time and I had no information about how Mom was doing.

Norris:

I probably have a great deal to share, which is why I’ve been attending the Alzheimer’s support group. Unless one is willing to sit down individually one can only share small amounts in group meetings.

Dave:

  • You are number one; if you don’t take proper care of yourself, the one for whom you are the caregiver will suffer. This is not a selfish attitude at all.  It is a survival attitude for the both of you.
  • Expect the unexpected.
  • You will be amazed at how many true friends you really do have; help will come out of the woodwork from everywhere. Accept it; give thanks to them and to your God for all of it.
  • Continue to give back and to others as much as your own situation allows.

What will you do differently if confronted with another caregiving situation?

Vickie:

I will recognize the importance of maintaining wholeness for the caregiver. After all, the care receiver wouldn’t want it any other way.

Judy:

I will search out resources in whatever community I’m in. There is a long tradition of martyrdom in my family and I hope I would break the tradition for my own mental and physical health.  I wish my sister would do the same.

Dave:

Be just a little more proactive in asking for help.

 Share your experiences with caregiving in a comment on our Share Out Loud Blog

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