Here's Your Brown Bag
Here is your brown bag, sandwich tips, and advice to “take with you” as you navigate your care giving journey.1. This is going to be more difficult than you first thought it would be.
Certainly, many of us take on the role of primary caregiver out of love and dedication. But until you do it full time, you really have no idea how challenging it can be. I am not saying "don't do it"; I am saying give consideration to your own limits. Those can be your time, or your money, or your other relationships (i.e. your spouse, children, etc.) Before you take on any job, it is always best to consider all the options and how that job will impact your life. Trust me, care giving will have a huge impact on every facet of your life.
2. Plan now for what you hope will never happen.
While you may plan to "keep Dad at home", go ahead and do some checking on home care agencies that can provide assistance to you, or long term care facilities, even adult day facilities. Alzheimer's, other dementias, and many debilitating diseases can be so challenging, that while you may never want to consider long term care, it may actually be the best option at some point. Rather than having to make a quick decision in a crisis, if you have explored options, visited some sites, you can make a more informed choice should a crisis occur.
In addition, consider financial planning as well as end of life issues. Make sure mom or dad's money is secure. Ensure that your name is listed on all accounts. Consult an elder law attorney about financial options. Make sure you have secured a Living Will for the person, or appropriate Powers of Attorney. Does your state recognize the MOLST (Medical Orders for Life Sustaining Treatment) or POLST or POST form? This has different names in different states but it is a portable and enduring form for orders about CPR, and other life sustaining treatments. It is more detailed than a Living Will and must be signed by a physician.
3. Use Relish and "Catch - Up"
There are going to be challenges ahead, but relish any good times, laughs, and happy events. I often have caregiver envy, because my mother can be so challenging, and hateful. I watch other caregivers who have "sweet" and accommodating folks for whom they care and I feel envious. But there are days when my mother is happy and even fun. Occasionally she even says she appreciates me! I relish those moments.
Also, relish any chance you have to "catch up" on your sleep, your own healthcare needs, as well as your own time for relaxation and fun. If someone offers you help, TAKE IT. When someone asks if you need help do you often answer with "Oh, we're fine, thanks"? If someone offers, take them up on it!
4. Remember you are doing the very best you can.
I seriously doubt that you wake up in the morning and state, "I am going to do an awful job at caregiving today!" While some days will be better than others, you, for the most part are doing the best you can. Stop and read that sentence again. Can you do better than your best? No, you are doing your best. Pat yourself on the back.
5. Develop a new habit.
It is easy to remember the worst, the awful, the most aggravating, the most difficult. I am suggesting you develop a new habit. Each night before you go to sleep, write down the BEST moment of your day. It may have been the rainbow after the rain, or it may have been the sweet smile of the person for whom you care. Or some days it may be the break that you received, when someone stepped in to help you. Or it may merely be the fact that this day is now over! But write down one moment of the day that was the best. And think about that moment as you lay your head down on the pillow. And after a few weeks, go back and review all that you have recorded. You may find that list of "bests" to be encouraging and may help to give you a more positive outlook during the difficult times. Give it a try.
In the world of Sandwich Caregiving, the key to your survival may be a Club Sandwich!
Consider your own limitations and personality. How busy are you currently? Do you have children still living at home? How busy is your spouse? How willing is your spouse to have your time divided and often dominated by caring for someone else? How stressful is your current job? Are you a "neat freak" who must have everything in its place? Are you generally a disorganized person who doesn't keep good records? Do you have a health condition that could be worsened by lack of sleep or by stress?
All these things should be considered as you take on the role of primary caregiver and will impact your decisions about whether to employ paid caregivers, or place your loved one in long term care, leave your loved on in his or her own home or bring them to live in your home. It may mean you have to adjust your obsession with having your home be neat and tidy at all times. Or it may mean that you are not as organized as you should be so you may have to learn some organizational skills.
And just because you place the person in long term care does not mean you won't be a hands-on care giver. But there may be advantages to that placement that you have not considered. Every situation is different and that is why it is important to "never say never" and to be open to options.
Lean on others and learn as much as you can. You will not be able to cope all by yourself. You will need help. That help may mean asking someone to take over some of your personal chores, such as walking your dog or picking up your children from ball practice. It may mean saying "Yes, sure, that would be great." when someone offers you some help rather than saying "Thanks but I've got this." It may mean attending a support group where you have a safe place with others who are having similar experiences, to vent, express your feelings and to gain insight into how others are coping. It will truly impact your "success" as a caregiver and your own health and well-being.
It is also very helpful to learn as much as you can. Attending a support group, or calling a disease association to learn more will help you in making tough decisions or in knowing what is "normal" or to be expected. Be careful of internet information. You can find ANYTHING on the internet - some quite helpful and educational, and some not so! So use respected sites for your on line education. An informed caregiver is much less stressed and confused.
You are not perfect, you are doing the best you can. No caregiver wakes up in the morning and says "Today I plan on being the very worst caregiver I can be!" We all are just doing our best. Yes, we make mistakes. We have days when we are more distracted or more exhausted and lose patience more often. But we are trying to give the best care we are capable of giving. Remember that and pat yourself on the back.
Also remember that you are acting as an umbrella. You cannot stop the rain, or the aging or disease process. You are merely assisting in making things more comfortable during the inevitable.
Unburden yourself to someone you trust. That's where close friends, clergy, a counselor, therapist or a support group can be helpful. You will have feelings of guilt, anger, frustration. You will have days when you hate caregiving and don't like the person for whom you care very much. That is all normal, but it helps to be able to say it to someone who will empathize and keep your feelings confidential. Again, a support group can be a great place to unburden. Keeping those often conflicting emotions bottled up inside is not good for your stress level or your well-being. Sometimes keeping a journal can be helpful or finding an on-line chat group of other caregivers. Whatever you choose, make sure you find a way to release those feelings.
Be business-like - proper paper work, records, journal of incidents and symptoms. This is where organization can be very helpful. Know where the important papers are located. Make copies to keep close at hand. And if those important papers have not been done, DO THEM NOW. Powers of Attorney, a living will, as well as a regular will can be so very important. Is your loved one in long term care? Do you have a POST, POLST or MOLST form? (These are all a more detailed outline of wishes or recommendations for life sustaining or end of life care that are signed by a physician and should follow the individual from care setting to care setting.) Check to see which form is used in your state. All too often families wait, not wanting to address the inevitable and that creates more stress and confusion as time goes on. In fact, make sure you have all those important documents for yourself and your spouse as well! Make things easier for your own children in the future.
Do you have the proper insurance cards? A list of all medications and dosages? Frankly, I keep much of that in a zip lock bag in my purse. You might be surprised how many times having it that handy has been helpful. It doesn't help the weight of my purse, however!
Stay balanced. Take care of YOU as well as the person for whom you care. I can't say this enough. It is crucial. Yet, I also know how challenging this can be. The first few months after my mother's first hip fracture, I canceled my eye appointment, my "female" doctor appointment, a dentist appointment as well as my annual physical. I didn't have time for my own care - I was dealing with so many issues concerning my mother. Luckily, I didn't have any serious health issues. But I am not sure my choices were the best ones - I may have just been lucky.
There are numerous statistics about the health decline of those who are caregivers. It's a fact that cannot be ignored. You want to be available to provide care and support as long as your loved one needs you. That won't happen if you don't take care of yourself. Keep something for yourself or add something if you have few hobbies or stress relieving activities. Commit to continuing with weekly choir practice, or your Zumba class, or golf game. Join a Yoga class or a Book Club. While you may have to rearrange or give up some things, DO NOT give up everything that you enjoy or that relieves your stress. It won't help you be a better caregiver and, in fact, may negatively impact your caregiving ability and stamina.