LESSONS FROM MY TIME AS A CAREGIVER
It’s almost guaranteed at some point in our lives we will be presented the opportunity to be a caregiver to a loved one. This has happened to me twice, once with my mother who died from cancer and another time with my husband when he was diagnosed and eventually too, died from cancer.
Despite working in health care and having some experience with the care my mother needed, I was overwhelmed and unprepared for everything that was to come. I was providing his care, managing his medical appointments, managing my household, taking care of two teenage boys while having to work part time so we could pay the bills. As his care and his needs progressed with the disease, I clearly needed help. I was afraid that if I asked for help, I was somehow incompetent and would be letting him down as a caregiver. I didn’t want my husband to think he was a burden on me, but I didn’t want to burden anyone else by asking for help either.
Family and friends would say the customary, “if you need anything just let me know.” I did need things but I just couldn’t and didn’t reach out and ask. I would much rather do for someone else than ask someone to do for me. I constantly second guessed everything I was doing. You learn very quickly that there is no manual. I was constantly second guessing every decision I was making and I would feel so guilty about longing to go back to a time when no one was sick and I could live my life with normal, everyday issues that we all stress about and really shouldn’t. I still have guilt about those thoughts.
People really do just want to help, and I didn’t realize that letting them help would also make them feel better as well. As an Occupational Therapist I tell caregivers all the time its ok to ask for help when providing someone else’s care, that it actually makes you a better caregiver. We must take care of our caregivers, even when they are too proud to ask for help.
If you know of someone that does this day in and day out and you know there are things you could do to make their life easier, just do it, just help. Don’t ask for them to ask. I would always tell people, “I’m fine” when they asked how I was. I wasn’t fine. No matter what you do for them, I promise it will at some point be appreciated. We must let them know it’s ok to not be fine, it’s ok to need help, and it’s ok ask for it.
HAVING A PURPOSE
As an OT in home health and an Aging Life Care specialist I am well aware that people are living into their 90s. When I was younger and would think of our aging and elderly population, I incorrectly assumed, like many others, that as you age you just lose interest in things and are content to stop doing a lot of the things you enjoyed doing when you were younger. It never occurred to me that there were actual reasons why they had to stop doing what they loved or enjoyed doing such as, decreased mobility, vision, hearing, and other medical problems.
Some of my patients that chose to move into an assisted living for increased socialization complain about the quality of activities geared towards them. There has to be more than just playing bingo when you reach a certain age. Everyone needs a reason to get up in the morning, it doesn’t matter if you are 25 or 95.
Just because you no longer work does not mean you no longer have a purpose. One of the saddest things I have ever heard from a few of my older patients is that they are just waiting out their days until they die. When it’s possible, people save money for retirement to meet their financial needs as they are no longer working. We also need to plan for and figure out what our purpose will be when we are no longer working, what is it that we really like to do and how can we continue to do it as we get older.
My patients that have a busy social calendar are so much happier, even with physical and medical problems they are much more motivated to maintain their independence. Where there is a will, there is a way.
As an OT I can promise you that almost anything can be adapted or modified. Depression after retirement and in the elderly is rampant. As an added benefit to having a purpose and staying busy the research on dementia supports that having a healthy social life decreases your risk of developing a cognitive deficit. Adult daycares are a popping up everywhere as well as businesses geared to support taking care of the elderly. Some responsibility lies with us as children and grandchildren to keep our family members active and motivated to stay engaged for as long as we are blessed to have them with us.
It is never too early to start saving for retirement, just as it’s never too early to start thinking about and saving for our purpose.
LOSS OF INDEPENDENCE
Losing your independence is horrible. There is not another way to describe it. There are many different degrees of independence and what is important to me may not be as important to you and vice versa. I have worked as an OT for 29 years and I have shared tears with many patients about losing some form of their independence.
From not being able to take themselves to the bathroom or shower alone, to no longer driving, to not being safe to live alone anymore. Conversations with parents about no longer being safe to drive or live alone are never easy. What do you say and how receptive do you think they will be? How receptive would you be? With my patients I work really hard to put them in situations where they can see for themselves, they are not safe anymore and then hope they would recognize it and accept it. It is never easy.
These types of decisions are never taken lightly when I am asked for my opinion or recommendation. Sometimes people will accept things from someone other than their spouse or child and bringing in a professional can be very effective. In my experience if you have these conversations before it is a problem it always goes easier once it does become a problem.
Open and honest discussions early on can prevent difficult conversations later. I truly believe a good quality of life with dignity is dependent on maintaining as much independence as possible and being able to age in place is fundamental to that. Even if you need assistance to shower it doesn’t mean that the process should cause you to lose your dignity.
I absolutely love being able to assist people with resources that will maintain their independence and quality of life, no matter what that level that is. It’s why I went into healthcare in the first place and why I love being part of the solution.