In our family, we care for all ages from the babies to the grandma. Sometimes, that is really frustrating and all the time there are many blessings that come to caregivers. Most of the time that frustration leads to change for the better and therein lies one of the blessings that we always see. Caregivers come in as many varieties as those they care for so our experiences are nowhere near the only solutions available. Our hope is that some of the things that have helped us to serve our family better will in some way help other caregivers to find solutions to those issues that plague them.
I got sick this summer. It took over a month for me to recover and be able to work through my life again. I am so grateful for the caregivers in my life who care so well for those around them. There I was standing-well sitting, mostly-in that situation (the situation of being around amazing people and needing care) and I did learn what it was like to be on the receiving end. H.H. and Youngest Daughter were very careful to make sure that the animals were cared for and the lawn and gardens were watered. After H.H. went back to work, my good friend and walking partner rode her bike out and checked on Youngest Daughter and I everyday. She helped us move hoses and other chores that were too difficult at the time, because I had given my malady to my youngest offspring. One day, this fantastic lady made us homemade chicken noodle soup. I lived on this elixir of the gods for many days. I only ate about 4 tablespoons of anything at one time, so every 2 hours I had soup.
This gave me such a great opportunity to see what a horrible patient I am. It gave me a chance to see how I caused some of the frustrations that I complain about as a caregiver and to see how I could do better as a patient to ease those frustrations. This summer also allowed me to be able to see how we cope as a family with some of those frustrations. Here are 5 of those frustrations as I see them.
- Finding personal time- Many caregivers find that time for themselves is one of the first things to go. Many first-time parents struggle with this real problem. Right now we are a family of adults watching out for each other, for the small people in our life, and for Grandma when she needs us (and more often than that when she doesn’t know she needs us), so its not as difficult as it could be or has been. When H.H.’s Dad was in the last few months of his struggle with dementia, we found this to be one of the struggles we faced for ourselves and for Grandma. Giving each other breaks was really important. Having friends that helped out was also very important. After having done this, we know how important personal time is to everyone so we try to help each other with this-whether they be overwhelmed moms and dads or an older person that can no longer drive themselves to the store. I have another friend who is a Pilates instructor. Back in January, she started doing a class for whoever could make it at 6 AM, a couple of times a week. This class has really been a blessing to me not just in the health benefits but also as a physical outlet and an opportunity to hear about what is going on in town. Youngest Daughter’s friends have started a Friday movie night and that has helped her as she had to give up school and job when her migraines were so bad. Helping someone to have time for themselves is probably one of the greatest gifts that a caregiver can be given and one of the most important things a caregiver needs to seek out.
- Patience-is constantly required and maybe the hardest of the frustrations to solve. The road to learning patience is paved with God’s constant mercy though, so I find that the harder I try the more blessings I see. Many people find that patience with little people is more difficult than patience with adults. I find exactly the opposite. Little people are often much easier to get along with and much more inclined to “go with the flow” than to need a routine. Many adults insist that everything be done their way even if they aren’t the ones doing it. We all clean house differently to accomplish the same thing but in several homes that I have cleaned the lady of the house insisted I use their products even though mine gave exactly (or even better) results. I must say that caring for Youngest Daughter throughout her migraine experience and Grandpa through his dementia have been a pleasure. They both maintained their sense of humor and their gratitude has been heartwarming. Both said “thank you” for even the smallest service. Grandpa’s sense of humor right up until he could no longer speak still has me laughing and quoting him. One night, after he couldn’t walk or dress himself anymore, I was helping to put him to bed. “Dad”, I asked, “do you want another drink”? As soon as I saw the twinkle in his eye, I knew I should have been more specific and included the phrase “of water”. He quickly answered, “Yep, I’d take another drink but not of that stuff I had last time. Look where that got me”. Then he started laughing as hard as I was. After 7 years, the memory of that conversation still makes me chuckle. Patience is earned, I have decided. And it is well worth cultivating.
- Flexibility-I cannot believe how flexible a caregiver must be. We have tried really hard to learn how to maintain a schedule and chuck it out the window on a moment’s notice. I cannot count how many times the plan for the day was thrown out the window because an emergency doctor appointment or a trip to the emergency room suddenly became the most important order of the day. I have learned to carry a book in my purse or games on my phone to entertain myself or others while sitting in waiting rooms. I remember a time when there were 3-4 doctor appointments in one day for 3-4 different people. I was babysitting at the time so I would just pack up my little ones and off we would go to spend the day playing in waiting rooms. I used to read to my children every night before I put them to bed. From the time they were just little, we read really long books, one chapter a night. Sometimes I just carried that book in my purse and we would read in waiting rooms. Two summers ago, Gramma started complaining in May that her knees were hurting terribly, One day, near the end of June, she just refused to walk anywhere except to the bathroom and to bed. She would get up every morning and just sit in her chair. Overnight, she needed meals taken to her and help with her laundry, all the way until September when she had a double knee replacement surgery. Everyday, I make a list of the days duties and some things I would really like to get done. I prioritize it and then I usually have to reprioritize. H.H. says, “We are so flexible, we are fluid”. Many times that is exactly right and we need to be. Being able to let things go and being okay with that is a BIG part of the blessings I see as a caregiver. It makes caring for people so much more enjoyable!
- Income-Sometimes this is a really big issue. Last summer, a medication caused a very serious medical condition in Youngest Daughter. We spent the evening and the first part of the night in the emergency room until she was finally admitted to the hospital sometime after midnight. H.H. was away at work. I slept for a couple of hours in the chair in her room, left her scared and not sleeping to run home, take care of Libby, and change my clothes to go to work at the bakery because I didn’t have anyone to work for me. H.H. made it home the next morning and got to the hospital in time to meet with the doctor and about the time I finished enough of my work that I could leave the baking to someone else. It took several days, but Y.D. recovered, thankfully and things went back to normal for about a month. Then Gramma got sick. I tried for several days to get her to let me take her to the doctor but she kept refusing. One night, she fell several times and was very confused. I called the ambulance in the night and followed them into the hospital. I told the doctor what I knew about everything that was going on, left my phone number with them and went straight to work once again to hurry through my morning work and get back to the emergency room as they were admitting Gramma to the hospital. It is difficult to get paid when one has to keep leaving in the middle of one’s shift and difficult to hold a job when one is constantly running out on their employer. What to do about this is a dilemma. Finding the solution to this dilemma is ongoing for us. I quit my job last October for other reasons, but finding a flexible job to take its place has not gone so well. Since H.H. is gone so much, the solution for us has been for me to stay home and we have tightened our budget. Working from home has started to open many options for us. We have had the added blessing of Y.D. finally having her migraines go away for the most part so she can start getting her life back. It will be so wonderful for her to have her finances and life plan back on track. We have learned a lot about juggling finances but I feel like learning to budget would really make my life so much better in so many ways. I’m pretty frugal and pretty good at making many of the things that we need but putting together a budget and sticking to it has always been a struggle for me. The blessing in this frustration is learning to get by on less and learning what is available for assistance. There have been many times when Gramma’s conditions have qualified her for Home Health Services and Meals On Wheels and Grandpa’s condition qualified him for Hospice Services. These wonderful folks have taught me so much about caring for those who can’t care for themselves, how to lift someone who can’t help, and in general have been another set of eyes on a situation which has freed us up to go to our employment. What a blessing!
- Emotional drain-Even if the need for care isn’t constant, there is an emotional drain on an entire family when someone needs care. It doesn’t seem to matter if that is a new baby in the home, a new illness, a sustained illness, or an occasional illness. My sister, the nurse, often has advice for us when we are running low on energy or patience or good will in general. She pointed out that we all deal with changes in our lives, even those brought about by necessity or emergency, the way we always have unless we make a conscious effort to change our methods. If we have always turned to God for help and have had faith in His outcome then that is how we will deal with emergencies. If we have not, we will have to make an effort to change in order to see the good He does for us. If we have always used anger and manipuation to MAKE people behave the way we want them to because we are afraid they won’t help us out of love, then that is how we will treat our caregivers instead of thanking them for their service. A person has to want to change to stop treating folks in this manner. It is draining for a caregiver to care for someone like this but it is very necessary to recognize the traits of those we serve. It makes it easier to cope if we understand a little more about behavior. From time to time, we have joined support groups. These groups have helped us find temporary and longterm solutions to emotional drain. This is one frustration that we struggle coping with. This is the one that we need feedback from you on. How do you cope with the emotional drain, the constant weariness in spite of the love you have for the person you care for? Please comment and let us know.
This is our top 5 list. This post has actually taken months to write and I apologize, it is quite long. We enjoy our roles as caregivers in spite, and sometimes because of our frustrations. How did we do? How many of these frustrations do you deal with and what others do you have? How do you cope with them?