(Life Stage, Family, Relationship Changes)
My guess is you never took a course in high school or college, called “Aging and Independence 101 for Caregivers” If you are a caregiver of elders now, you may sometimes wish you had studied this in school, or somewhere along the way It can be a tough place to be in, even when you have chosen to assume this responsibility. When you find yourself unexpectedly thrust into this job, or even when it happens quite gradually, it can be filled with questions, frustration, and feelings of resentment. In any case, it can be exhausting and draining, though it can have many rewards as well.
I think a lot about independence. In my youth, I fought for it with a ferocity unmatched by most of my friends. I was tired of my role as baby of the family. I couldn’t wait to break free of what I saw as rules and expectations that imprisoned me and kept me from expressing my true self. I felt myself bound and held captive by routines and structures that I am sure my parents saw as safe and nurturing. It took me a lot of years and life experience to gain some perspective on this and to begin to appreciate the haven and the protection that was my gift from my family. I never really lost my need to be independent, to march to my own music and to carve out my own rocky paths. In doing so, I have often had to scale obstacles that were sometimes more self-created than fashioned by anything external.
I am keenly aware of the loss of independence that can, and often does, accompany aging. I am not looking forward to this for myself and like most of us, am hoping it won’t happen. Very few elders, though, continue to take care of themselves right up until the end of their lives. I am also an ardent observer of aging, as well as a participant in the process. I am a Baby Boomer who doesn’t always enjoy the admission that my so-called “Golden Pond Years” are here now, and not in some hard-to-imagine future. Some of my work is with clients in the Sandwich Generation who still have goals to reach and things they want to accomplish, and kids living at home, but who are now caregivers for the older generation too. On top of this, I have been a caretaker for elder loved ones, all of them now gone. Therefore, I think I have had a pretty good sense, perhaps more than some folks, of how hard it is for people to lose their independence and autonomy when their abilities begin to decline with age.
Even with this understanding, it was frustrating for me to deal with both my mother’s and my mother-in-law’s refusal to let go of the past and to acknowledge that they needed help with their activities of daily living, and with their life management.
The insights and wisdom of maturity have mellowed me a little and life has taught me a lot. Fortunately, I learned the lesson that there are times when it’s ok, and even healthy and strong, to let yourself be at least a little bit dependent on those you trust and value. I hope I will be gracious and will accept help when I need it from my adult kids and from whatever community resources will be in place to aid me, but I am guessing, knowing myself, that it may still be a struggle for me. I also suspect it will be very difficult for my kids to begin to think of me as someone whose independent spirit and abilities are faltering.
If your elderly parent is declining, either mentally, physically, or both, and you are having to take on more and more responsibility for care, you are probably dealing with an unfamiliar range of emotions. You may be feeling worried, frightened, sad, and even angry. You may experience guilt about your own anger. You may resent being in this new role of caregiver, and may suddenly feel like you are the parent and your parent is a child. Feeling this way may cause you to overreact to things that happen, at times. In most cases, your parent is probably also feeling some hurt, anger and resentment about this role reversal.
A client I will call Andrea, is the main caretaker of two close relatives who have dementia and some physical ailments. She mentioned that she overheard them speaking to each other and complaining about her, as well as referring to her in a way that made her feel she was almost perceived as an enemy. She felt angry and hurt upon hearing these conversations. She said it hurt mostly due to all of the personal sacrifices she had made to keep her relatives at home with her. She knew it was, to some extent, the dementia that was driving their perceptions but she felt pretty bad anyway.
The client and I discussed what the loss of so many functions and so much of their lives must feel like to her relatives. Aside from the resentment and grief over losing their independence and having to rely on her and others to care for them, dementia is sometimes accompanied by some paranoia, even in the early stages, and with some combative or argumentative behavior. Knowing this doesn’t diminish what we feel when we are in such situations. It is extremely important to keep up our own positive self-talk and to tell ourselves that it is probably the illness talking and that we are doing the best job we know how to do. It is more important than ever to maintain a good self-image and to remind ourselves of the wonderful qualities we possess. We may not hear about these much from others, and though it may feel silly at first, it helps to take a couple of minutes to look in the mirror and to” own” our good qualities and take pride in them, or even to write them down and study them. We can say them aloud to reinforce the thoughts..
Sometimes being a caregiver for the elderly causes us to make some unpleasant and unpopular decisions. This comes with the territory, whether or not we like it. If you have experience parenting young children, you may remember their struggles to individuate from you and to assert their independence. This can be a little extreme in toddlerhood, when kids push limits all the time, want to do things on their own and have frequent meltdowns when not able to do what they want. Yet, at the same time, when given the freedom they crave, they may revert to an earlier stage and act shy, fearful and insecure. As parents, we had to learn to loosen up the apron strings with our kids, to stop hovering, and to cut them some slack, while simultaneously protecting them from harm to the best of our ability. We certainly did not set them up for failure or reprimand them when they weren’t able to do what they set out to do. We did our best to give them simple choices.
We said, “You may do this or that. You may have the green one or the red one. You may stay up for this one TV show if you pick up all of your toys and get into your pajamas first. You decide if you want to do that.”
We didn’t give them choices when their safety and well-being were potentially at risk. We didn’t say, “You decide if you want to run out into the street”, or “You decide if you want to grab the cup of hot coffee sitting on the counter.” We acted swiftly, often without thinking much about it and we protected them, or whisked them off to safety. We tried to impress upon them certain important lessons that weren’t optional to learn. We tried to preserve their dignity at the same time. If their feelings were hurt due to our shouting “No” as loudly as we could, or because we had roughly swooped them up and out of harm’s way, we explained to them (once we had each calmed down) in a way that was appropriate to their age and cognitive ability, why we reacted as we did. We then reassured them that they were still loved and that we would be there to protect them. (Maybe then, we retreated into a corner with a chocolate bar, a glass of wine, or called a good friend to let off some steam and to hear someone else say we were good parents and made the right calls.)
We may have to behave similarly with our elderly parents, despite feeling uncomfortable about it. Obviously, we must do our best to respect them, but must limit their choices if they get to a point when they don’t make safe, healthy or appropriate decisions.
I recall having many heated discussions with my mother about her flimsy, floppy bedroom slippers being unsafe. She told me she had worn that type of slipper her entire life and wasn’t going to give them up. After a few near disasters, I stopped arguing, and one day when she was napping, I simply removed the offending slippers to the outdoor trash can. When she woke up, I waited till she had a snack and a cup of coffee, then informed her that they were gone, that I couldn’t get them back and that I was so relieved not to have to worry about getting a call to learn that she had broken her hip due to a fall caused by the slippers. She wasn’t happy with me at first, but she got over it and I got over the guilt that I felt over doing this, once I could relax my concerns about her falling.
With my mother-in-law, the taking charge involved our insisting that she have at least two meals in the dining room downstairs where she resided. She still lived independently at that point, but she was offered optional meals in the dining hall of the assisted living several floors down, where she would later move. We made the arrangements and she protested strenuously. We pointed out that we were finding spoiled food in her fridge and cupboards and that we feared her poor eyesight and sense of smell might cause her to eat something bad and get very ill. She was also losing weight. She didn’t like our decision and we didn’t like being in that position, but we had to protect her. We let her choose which two meals she wanted to have in the dining room and she liked retaining that freedom of choice.
As time went on and each of our mothers declined, physically and cognitively, we were forced to take on more and more responsibility and to make more choices for them. It definitely took a physical and emotional toll on us. We began to realize how important it was for us to take better care of ourselves. Doing this is crucial to your survival as a caregiver. I always say, “You can’t fill anyone else’s bucket if your own is so full of holes that everything in it has run out”. I can’t emphasize this enough! As scarce as time for ourselves may be, we have to find a little of it each day, to do something fun and relaxing for ourselves. This is not an indulgence, but a necessity, if we are to remain healthy
We have to be mindful of keeping a healthy balance between doing for our elders and doing for ourselves and others in our lives. If we don’t, we will pay a steep price, not only with our health outcomes, but with our relationships with the other people we care about.
My mother-in-law’s thrilled shrieks and elation over our arrival when we visited her in the Dementia Care Unit near the end of her life, often turned quickly to tears, moans and complaints. Our visits grew less and less pleasant. We would try to divert and distract her. Sometimes this succeeded, but often it did not. When all possible solutions had been explored and tried, but did not work, we had to make the difficult decision to lengthen the intervals between visits. We felt bad, but self-preservation dictated that we do that. This enabled us to have some time to ourselves so we could build up our strength and energy reserves for the next visit and for our own lives. By that point, her concept of time was poor anyway, and she didn’t really know whether we had visited the day before, or four days earlier. We definitely felt guilt initially over this decision to extend the intervals between our visits, but we realized it was a choice we had to make.
In time, we came to recognize that we would not be able to achieve perfection as caregivers, and still continue with the rest of our lives. We learned shortcuts and tools to help. The job was never easy. There were numerous times when we wished we had an instruction manual to tell us exactly what to do, and how to survive this difficult life stage, without taking away our loved one’s independence, or eliminating our own.
We got through it, though not without scars and battle wounds, because that is what happens in life. When so much emotion is rolled up into something like this, it takes strength and resolve that many of us don’t always feel we possess, but we can and must build it up over time. You will get through it all, much the wiser and in spite of how hard it all was. When they do die, you will miss the loved ones you cared for, though you may also feel some welcome relief. That is completely natural.
I just read a movie review in the newspaper. It was written by Michael Phillips. His review and the movie had nothing to do with aging or caregiving, but he used a phrase I can’t seem to get out of my head. He talked about the “harsh but beautiful business of living”. No matter what, let’s not forget the beautiful parts, please.