First of all, realizing you need help is the first step. If your caregiving began because of an accident, you probably received some help right away. The change in your loved one was almost instantaneous, and you immediately found yourself shocked by all the new people, specialists, aides and equipment just to keep your loved one alive and comfortable. If your caregiving began because of an illness, you may have had an experience like mine.
In all honesty, several years before I became a full time caregiver, I was a helpmate to my husband. When he began showing signs of neurological symptoms, I started doing research. His diagnosis of Secondary Progressive Multiple Sclerosis came after he had already had 2 years of consistent and unusual symptoms (although he had 10 years of intermittent symptoms prior to that). They were symptoms that had already changed our lives. Once the diagnosis was finally made, there was no huge adjustment to my work load. We just continued along, me helping out when he was fatigued, running some errands so he could focus on work, etc. No big deal.
But, as his illness progressed, my work load became heavier and heavier. I'm sure you've heard of the frog that was placed in a pot of lukewarm water. Slowly the heat was increased until the frog found himself boiled to death. That's kind of how I describe my caregiving responsibilities. Increasing amounts of "aide" to my Dear Husband until one day, I woke up to a pot of boiling water. It's difficult to see the changes in our responsibilities because they happen so slowly. Some wise counselors once told me that if you are asking, "Is it time for help?" the answer is yes.
Next, a friend encouraged me to write down exactly what my responsibilities were. I was shocked when I kept a log for two days of exactly what I was doing. Each time I did something, I wrote it on a piece of paper. At the end of the first day, I had filled three sheets of notebook paper. I looked at it and thought, "I need a vacation." While none of the jobs were REALLY difficult, each little job on top of the other added up. It was like the straw that broke the camel's back. We’ll call it the Accumulation Factor. I found too, that I really didn't have time to keep a journal, I was too busy. THAT was an eye opener...I didn't even have time to make a journal.
As I looked at the list of things I did for my husband, I noticed they fell into a few categories. Here are my categories and some sample items in each.
1. Things I don't mind doing and/or love to do.
- Preparing his meals and snacks and helping him eat
- Rubbing his muscles to help with aches and stiffness
- Visiting with him and being his companion
2. Things that can easily be delegated.
- Getting him a glass of water, several times a day
- Putting his socks on for him
- Finding his hairbrush (how does it always disappear???)
3. Things I can't stand doing.
- Bed baths
Then, of course there are other things that have to be done. Don't forget to add items like maintaining the car, banking, groceries, bill paying, cleaning, laundry....on and on.
Decide what kind of help you actually need. Do you need skilled nursing care, help with housework, a personal care aide, or family and friends to fill in the gaps? Skilled nursing care may be covered by insurance, Medicare, or Medicaid. I found that my children (those who were still home) were a valuable resource. Without overloading them, or abusing my role as parent to burden them down, I found they were able to handle some things and relieve some of the stress. We hired an aide to come to our home and give my husband a bath once a week, with me doing sponge baths between her visits, as needed. And when my mom moved in with us, she became an enormous help in areas of housework: laundry, dishes, dusting, etc.
Be bold and get the help you need. Now, take the list of responsibilities and decide who can do them. Family members, an aide, or maybe friends? Find the right person for the job.....Make a list of people to contact and put under their name the job you need them to do. I have found that friends and family will tell you, "Let me know if there is ever anything that we can do to help." Take them up on the offer. Next time they offer, ask them what they would like to help with. Or give them some ideas. Tell them that your gutters need cleaning, or that you have a leaky faucet.
You may need to contact your doctor and set up a visit from a Home Health Company to evaluate your loved one's needs. Some care may be covered. Or, you may find, as we did, that care is only offered long enough to train you. You may have to budget some finances to hire help yourself. Only you can decide whether it is best to hire an individual or to hire an aide through a Home Health Care company.
The point is this....you can get help, but it will cost you. Time, energy, thought, possibly money and sometimes it will force you out of your independence, and out of your comfort zone. But, help is necessary in this caregiving journey. No one can do it all alone for long, extended periods of time.
Most of the time when we begin caregiving, we can only think of what our loved one needs. And we love them so much we find it a joy to give of ourselves. But, we will find that we only have so much time, energy, money, and patience to carry on for extended periods of time.
Compare the two scenarios. Your healthy spouse wakes up one day with aches and pains, a cough and sniffle. You both realize very quickly that this is the flu. For two weeks, while he recovers you pamper, coddle and love. You prepare tempting meals and snacks, you rent all his favorite movies, you cancel all previous engagements and spend every moment meeting each and every need. Two weeks pass, your husband is well and you're exhausted. Yet, you feel great that you were able to care for him and did a great job of it too.
How many times has this happened and you've done it, you've passed the test? Anyone can. It's short term. Our game plan for a chronic illness cannot be the same as for a two week flu. The flu rules do not apply. We're in this for the long haul. We may be at this for years....and we must survive to the end. Other aspects of our lives will continue, regardless of what we must do to care for our spouse. Groceries still have to be purchased, food prepared, house cleaned, laundry, financial decisions made, etc. No one person can do the work that you and your spouse once did together.
So, please do what it takes to get the help you require. And don't dare feel bad about it. We want to have energy left to lavish love on our spouse and that can't happen if we do it all alone!