The problem with funding has been rectified. The only major item remaining to be acquired is the shower wheelchair.
The change of caregivers has taken place. “Faith” started last Sunday, and already she is a comfortable part of the family. Faith is a take charge individual. She sends Sam out of the room when she performs Katie’s personal care. Moreover, she is a task-master with Katie’s exercises. This is important since Katie has lost a lot of her inherent drive.
The experience with Grace was an opportunity to learn and a sturdy building block for a successful experience with Faith. Sam has learned that he can step back and let Faith do her job—he is in fact, eager to do so. It is obvious that Sam is relaxing as stress decreases.
With Faith, I hope to believe:
THIS PLAN WILL SUCCEED!
I met Katie in the mid- 1990’s’s. At the time, I was teaching in an adult learning center. Some of our students were participating in an adult high school diploma program, and one of their competencies was to become certified in CPR. My husband suggested I ask the wife of his co-worker to teach the class. Katie is a nurse, and always willing to volunteer her time to help others. With her guidance, my students all passed with flying colors.
Shortly after this time, we began to socialize with Katie and her husband, along with another gentleman from the work group and his new wife, Judene. (Both Katie and Judene had caregiving experiences and were contributors to “What to Do about Mama?” These are the fictional names I used for them in the book.) For future reference I will refer to the three couples as: Barb and Dave, Katie and Sam, Judene and Manny.
We three couples would get together for dinner and games. Katie LOVES to play games and can get quite competitive (and so can my Dave, who generally expects to win). On a couple of occasions, Judene threatened to end the game if “the children couldn’t play nicely.”
Katie and Sam owned a time share and got a good deal every fall at a resort four hours south. We rented a townhouse apartment together and had days of fun exploring, hiking, golfing—and of course, dinner and games. Katie was the driving force behind all of this—our own personal activities director.
When my mother-in-law moved in with us, Katie moved into overdrive to make sure David and I got away for vacations. In addition to our fall resort trip, she planned a 2008 trip to New Hampshire, where we rented a bungalow on a peaceful lake. We kayaked and fished, and took a drive to the top of Mt. Washington. The following year she arranged a trip to the Finger Lakes, not only for fishing, but to visit the wineries—a passion of my husband, David.
Katie was the driving force behind these vacations. She knew how much we needed to get a break from our caregiving situation. She knew neither my husband nor I were going to get up the gumption to do this for ourselves. Katie and Judene were always there to listen to me and to give me their love and support. They both understood, because they had both been caregivers.
I will love them always, and I will do whatever I can to give back.
Sadly, the time has come…..
Click on http://youtu.be/GfKS98UTjB4 to view a UCLA Health Webinar on “Surviving Caregiver Stress” by Linda Ercoli, PhD.
Every caregiver who watches the webinar will find something that resonates with their own unique caregiving situation.
Some of the points that resonate with me are:
- Caregiving stress is impacted by the length and the load of the caregiving experience.
I was caregiver of my mother-in-law for seven years, four in my home. The last two years were characterized by escalating physical decline in conjunction with increased caregiving needs. What had been an overall positive caregiving experience became unmanageable.
- Caregiver stress is increased when there are fewer uplifts (positive perceptions).
I had assumed my caregiving role as a means to “give back” and show my appreciation. When I sensed my mother-in-law’s air of resentment, the positive perceptions of the arrangement eroded.
- Caregiver stress is impacted by role changes.
My mother-in-law was fiercely independent. She could not accept what she perceived as a “relinquishment” of control, such as when I began to set up her medications.
- Caregiver stress is greater when there are perceived problems relating to the family, as well as the care receiver.
We called a family meeting to discuss our need for increased support relative to increasing needs. My husband’s siblings were defensive. As relationships diminished, stress increased. As noted above, when my mother-in-law felt her “autonomy” decreased, her “animosity” increased.
- Coping strategies include “doing for self” through exercise, nutrition, activities, etc.
When I took time for myself or looked for ways to meet increasing needs, I was accused of being selfish. My mother-in-law stated, “Everything is for your convenience.”
- Coping strategies include availing yourself of opportunities for respite.
When I utilized hospice respite, I was again labeled as “selfish.”
- Coping strategies include finding support.
I joined to a support group; it was instrumental to maintaining my sanity and making difficult choices.
- Coping strategies include setting limits.
When my sister-in-law said she could not have Mom for Christmas because there would be three dogs and a grandchild there, my husband told her we would have one dog and seven grandchildren—our “request” was not negotiable.
- Caregivers should be aware of escalating caregiver burden: exhaustion, medical problems, unrealistic expectations, poor relationships, the need to control an uncontrollable situation.
Providing my mother-in-law with ambulatory support became unsafe since I was now in need of bilateral knee replacements.
- Caregivers should plan and prepare to transition to other care models when the burden becomes too great.
Although she did not want to leave our home, my mother-in-law moved to her daughter’s home when I could no longer care for her safely.
In “Me and These Men” May 5, 2014, MKC posts:
There are PLENTY of ways to lose your mind once your parent has moved in—but prior planning certainly does help. I address this same topic in my book, “What to Do about Mama?” on pages 72-73 and 77-78.
Providing Care in Your Own Home
As much as you think you can look dispassionately at the situation and develop realistic expectations, frankly, no one can imagine the scope of what he or she is getting into. How can you know the unknown?
But certainly, if this is the choice you make, be sure that you and your spouse or partner are as prepared as possible. Your home needs to be made safe and handicap accessible, with equipment such as grab bars and shower chairs. Throw rugs should be removed from walkways. It is best if you can provide one-floor living capability, which can be an extra challenge if there is no bathroom facility on that level.
Discuss how responsibilities will be divided among those living in the home, as well as those providing outside support. Don’t forget to talk about finances. Bringing your loved one into your home will put extra demands on your budget. Make sure you will have opportunities for respite and time for yourself; don’t “lose” yourself in the process of caregiving.
Most importantly, consider whether your relationship is strong enough to handle the demands of living together. If you have problems historically, they will continue or even get worse. Even if you believe you have gotten along well, be prepared; there may be some surprises you just didn’t foresee. Keep all the household members in mind—are there personality clashes? Then there’s the issue of the “others,” the ones who are not taking on the responsibility of front-line caregiving. Too often, they are the ones who second-guess or criticize you. If you haven’t felt resentment before, you will now, and that emotion can really destroy relationships. Are you prepared to cope with this ongoing stress?
If you opt to bring your loved one into your home, establish an open line of communication. Talk about and listen to expectations on both sides. It is so difficult to respect everyone’s roles when the parent-child lines become fuzzy. To encourage a positive and cooperative atmosphere in your home:
Designate a personal space for your loved one that is not too isolated from the rest of the household. Fill it with his or her belongings, collectibles, and mementos.
- Talk about individual routines, and try to accommodate everyone’s needs as closely as possible without compromising your household and family values. Will you have enough time for other family members? If your spouse or children are required to sacrifice what they hold dear, the household climate will become a breeding ground for resentment and conflict. Remember that family support is vital if the living arrangement is to be successful.
Emphasize household customs, and solicit support for avoiding unneeded disruptions. Will you be able to maintain important lifestyle concerns such as employment, social life, and vacation plans? Are you prepared to make adjustments?
As a family, discuss what you each value and what causes you stress.
Set boundaries in the relationship, but make sure to schedule time together.
Help the care receiver develop new activities and friendships.
Encourage mutual respect based on communicating wants and needs, not giving orders. Stress the importance of being open and honest with each other. This is particularly difficult when your care receiver goes around you to complain to the “others,” which also sets the “others” up to second guess your actions. Direct communication is the key to avoiding misunderstandings.
On the Caring.com website ( http://www.caring.com/support-groups), Neetsy said:
“My Mother in law has lived with us for 8+ years and is 88, she has 7 other children but they don’t want her to live with them. We also have a 14 year old granddaughter who is living with us. My question is this, My Husband and I have tickets and already planned a vacation to another state. The plans fell through for my Mother in law to stay with another of her children (they don’t want her on a Holiday) so now she doesn’t want to go. Would it be ok, for us to leave the two of them home alone with the 3 family dogs to care for 4 whole days? In case of an emergency, I have a father that doesn’t live far and can be called along with other relatives of mine.”
I commented in reply:
“Neetsy, of course we do not have all the details, but allow me to share how we dealt with this in our family. My caregiving situation was similar to yours in that we were caregivers for my mother-in-law for 7 years, 4 of them in our home with me as primary caregiver. We had major crises to deal with over the Christmas holiday 3 different years. My sisters-in-law were spending their holidays skiing out West. The last Christmas my mother-in-law was alive, my husband called his sister about taking Mom for the holiday. He was prepared for her response: “I cannot take her. We will have my grandson and 3 dogs in the house.” My husband replied, “We will have 7 grandchildren and 1 dog at ours. This is not negotiable.” Neesy, people can only take advantage of you if you let them.
As far as your granddaughter is concerned, I think it’s great that she is involved with caregiving. The experience will be important to the development of her character. My concern would be, however, that life is fragile and unpredictable. That’s a lot of responsibility for a 14-year-old. If a crisis were to occur, and the outcome was bad, how would that impact your granddaughter?
I wrote a book about my caregiving experience and those of 34 other caregivers. I am hoping “What to Do about Mama?” by Barbara G. Matthews and Barbara Trainin Blank will be helpful to other caregivers like you.”