Three years ago, Carol’s life changed dramatically and irrevocably when her husband of 50 years, Don, had emergency surgery. At age 75, Don was experiencing some memory loss but after having surgery and a nine-day hospital stay, his memory loss was dramatic. When Carol asked the anesthetist, she said that sometimes memory is affected but it typically recovers. Whether it was the trauma of the surgery, the medications, or something else she will never know, but Don’s memory did not recover. Subsequently, he lost his job, he barely knows his family members or how they are related, and he cannot remember what is said from one minute to the next. He constantly asks Carol how long they have been married and how old he is. Don lacks confidence in going most places by himself or having Carol leave him alone more than an hour at a time. This man, who drove the streets of San Francisco daily, can no longer drive because he gets lost easily and makes poor decisions. Sometimes, he is moody and makes hurtful comments; but the mood passes and he can be very loving. On the positive side, Don is fairly functional, he is physically healthy, he runs short errands, likes making puzzles, takes care of himself, and accomplishes small projects. He knows his memory is bad and he worries constantly. He copes by joking and doing what he can which is less and less. Never did Carol envision they would spend their later years in this way.
They visited retirement communities but that did not work for either of them. She also visited memory care facilities, but Don doesn’t need that level of care yet and she knows she would care for him more lovingly at home. So, she decided they would stay where they are for the time being. The area is known to him, there are many stores within walking distance, the cost is less, and she wants to be with him for as long as possible. She also met with several home care agencies to get respite care, but Don would have nothing to do with anyone else being in his home. So, it was mainly up to her.
Prior to Don’s memory loss, their goal was to “age optimally.” Yet, how could they do that given their current circumstances? She wanted to keep going for years. He wanted to live and be healthy but his mental abilities were marginal. Proponents of optimal aging stress the need for maintaining a healthy lifestyle and having a positive outlook on life. However, Carol found it took more than that to accept what was now her life and to make the necessary personal changes required to take on the challenge of aging optimally with Don. To this end, she developed a set of ten guidelines for herself.
The purpose of this book is twofold. First is to introduce the guidelines Carol adopted and to see how she uses them while living with and loving a man with memory loss. Second is to offer ideas that might work for you regardless of your caregiving situation. You are welcome to take the ideas and make them your own or let them spark new ideas. Here are the ten guidelines Carol adopted for herself:
- Maintain a healthy lifestyle – Incorporate six dimensions of wellness: physical, intellectual, social, emotional, spiritual, and functional for both of us.
- Develop a positive outlook – Focus on what she is grateful for and on her purpose, which is to keep him at home as long as possible.
- Be resilient, resourceful, and willing – Identify ways to manage her emotions and his behavior while he is at home.
- Practice self-care – Develop a self-care plan that honors her; only then can she best support him and the challenges he presents.
- Adopt effective habits – Choose resourceful and motivating habits; release habits that are outdated and are no longer habits.
- Evaluate perceptions and beliefs – Use perceptions and beliefs that support her and release ones that don’t. All perceptions are not accurate and all beliefs can be changed.
- Accept life’s changes – What is not acknowledged, cannot be changed. Once she acknowledges what is true, then she can make wiser choices.
- Examine choices – Remind herself that she chose to live at home with Don and make decisions that support her being as successful as possible for as long as possible.
- Create an inner coach – Adopt an internal voice of encouragement rather than listen to an internal voice of criticism.
- Refuse to be a victim – Discover what she can do and find ways to manage the stress of life rather than drowning in self-pity. Focus on solutions and answers. Focus
Now let’s take a look at how Carol applies the guidelines.
Guideline 1 – To maintain a healthy lifestyle, Carol makes sure they exercise regularly by going to the gym and walking. She fixes nutritious meals and basically follows the Mediterranean diet. They get together with family and friends regularly. They make puzzles and watch television to stimulate his brain. Together they function well, but Carol feels as though she is living Don’s life for him most of the time. She does her best to maintain all the dimensions of a healthy life style for them. However, she is aware that she needs to work on the emotional dimension and that Don is not a spiritual or emotional person; nor will he ever be.
Guideline 2 – Carol is grateful for the life she had with Don, the support of her family, and the life they have together even if it is different. Her purpose is to keep him home as long as possible and to honor her own hopes and dreams. She focuses on maintaining a positive attitude, looks for solutions, and what she can do as much as possible. She also documents Don’s behavior patterns to see what works. For instance, Carol realized that Don responds to her comments based on his perception of what she said. Often, his perception is off or he misunderstands the message; in part because he refuses to wear his hearing aids. He is also very sensitive to her mood and reacts accordingly. If she is upset, he worries; if she is discouraged, he is discouraged. So, she tries to be cheerful and positive, as much as possible. Don, too, is very grateful to be alive and to be as healthy as he is, but he has no purpose other than living another 20 years. He lives in the present moment with little memory of the past or plans for the future.
Guideline 3 – Carol reminds herself daily to practice being resourceful, resilient, and willing. She has to be resourceful and creative; to find new strategies to engage Don, to convey ideas in ways he can understand, and to adjust her ways of being. Don thinks of doing very little for himself, so Carol must plan his life and hers. She experiences many discouraging times and practice resilience – particularly emotionally resilience. She needs to be aware of herself, how she reacts in difficult situations, and what triggers her frustration. She digs deep within herself for the strength to be more patient, to believe in her ability to succeed, to empathize, to lead by example, and to identify possibilities. For example, she found that his moods and the fights do pass and life goes on. He doesn’t remember when they argue and she chooses to release the memory of disagreements, as best she can. It is so easy for others to say “don’t take it personally, it’s the disease,” but not so easy to do all the time. Finally, she must be willing to make the changes now required of her. Don has moments of resourcefulness and he is resilient, but basically, he does what he is told and is fairly willing to cooperate.
Guideline 4 – Carol decided to make her health a priority because she is now Don’s caregiver. She had been a people-pleaser and rarely put herself first; however, Don’s memory issues plus her own health issues raised her stress level and her blood pressure. Something had to change!
To take care of herself better emotionally, Carol decided to
- Sit somewhere in nature. Let the scenery, the fresh air, and the birds singing relax you.
- Have a soothing bath. Put some essential oil in the bath to unwind and let go.
- Breathe deeply. Oxygenate your body, reduce the tension, and refresh your energy.
- Find a comfy place and take a nap.
Additional strategies she used to bring a measure of peace in her life, were to write in a journal and practice mindfulness. She jotted her worries and anger down on a piece of paper and threw the paper away. This simple task got the thoughts out of her head and allowed her to dwell on them less. She built a support system of family, friends and coach in addition to a financial planner, CPA, and computer expert. Because Don would not allow for respite care, she took greater measures to take care of herself by blocking out time for her projects even if he just sat in a chair or slept. He can’t stay home alone and he doesn’t want a caregiver, so she takes him along when she runs errands whether he wants to go or not. She gave herself permission to take “alone time” and not feel guilty about it. Carol also learned to forgive; forgive herself for the frustration she feels, forgive Don for his constant interruptions, and forgive life for throwing them this curve. Finally, Carol is exploring her options and making plans for the future.
Carol found that self-care is a must. She has to put herself-first, find ways to get away for a while, and carve out time for herself. She also has to appreciate herself for the enormous task she has undertaken. One strategy she adopted is to better manage certain behaviors and situations. For example, she practices not letting his words hurt her. She tries to empathize with him rather than be defensive and to be more compassionate. She can only imagine how scary and fearful it must be for him: to not remember from one minute to the next, to not know where things are, or to make wrong choices most of the time. For Don, it’s all about him and now.
Guideline 5 – Carol knows that patience is imperative. Sometimes, it is very difficult and she loses her temper. She has to repeat the same information or answer the same question 15 or 20 times. Her habit was to say “I just told you that” or ask “How many times do I have to tell you?” She also tried asking him what he thought the answer might be. But those responses only caused frustration for him. So, she adopted new habits such as changing the subject, not telling him something was happening until the last minute and sometimes being less than truthful. She helped him remember the names of people he hadn’t seen for a while by calling them by name when they meet.
She gets his attention first before telling him something by turning off the television, eliminating distractions, standing in front of him, taking his hand or touching him. She sets him up for success as much as possible. In other words, if he were going to do a task, she gets out the tools for him. She gives him limited choices such as “Do you want to take a shower now or later?” Many habits Don relied on for years are gone, yet some remain and some he has to be reminded of regularly.
Guideline 6 – Carol had to closely examine her beliefs and perceptions. She was brought up to tell the truth, for example. However, she can no longer tell Don the truth regarding many matters. So, she had to change that belief to one that says sometimes she has to be less than honest, it is in his best interest. She learned to tell him about events only moments before they occur because he checks constantly and forgets quickly, even if she makes a list for him. He should not be driving, so she tells him she wants to practice her driving because she had not driven for a year.
He had been the head of the house, taken care of finances, fixed computer issues, and solved the problems, her perception was that she couldn’t do these things. But then she had to and she did figure out many things. Based on how he responded in the past, she perceived that he was often angry, but he really wasn’t, he was just trying to remember and organize his thoughts So, she had to rethink her beliefs and perceptions discarding those that no longer applied. Don still believes that he can do many things that he really can’t do any longer and many of his perceptions are skewed. Yet he strongly holds on to them and cannot be convinced otherwise. So, Carol has learned to not challenge his erroneous thinking, but agrees with him and works around it.
Guideline 7 – Carol is learning to accept this new life – being forced to take on all the responsibilities, having to manage his new behaviors, and losing the person she loved and counted on. This was not a role that she wanted. The definition that said acceptance referred to acknowledging what is true now and then deciding what to do about it helped her. In terms of accepting Don’s new behavior, Carol tried to back him up by making sure what he caused no problems. She had to accept that his brain could only handle one piece of information at a time or one task at a time; so, she broke everything down into small steps. They could no longer have meaningful conversations and their special little jokes and secrets were no longer available to him. Sometimes there were moments of discussion but he quickly forgot. So much of their old life was gone and so much is missing in the new one. She looked at her realistic options and chose ones that worked best and tried not to dwell on what was. She also accepted what she could – she couldn’t accept this as a forever role but she could do certain things for a while longer. Don doesn’t particularly like his life now, but little things satisfy him. Not only is his memory compromised but he bought into the idea of being an old man. So, he has no goals, wants to stay home, and only make little trips to known places. He just goes along and waits for Carol to tell him what to do. This is very difficult for Carol to accept because they used to do so many things together and this Don is a shadow of the man he was. The best she can do is to find other interests such as taking online travel courses because they won’t be traveling and learning to paint.
Guideline 8 – Carol has learned to make choices that include her needs as she keeps him home for as long as possible. Some days keeping him home is an easy choice, other days a very difficult one. When this situation began, she was putting all her effort into taking care of him, keeping him busy, and entertaining him, but she was soon depressed. She is now choosing more and more ways to support herself. Her additional coping mechanisms include setting and maintaining boundaries so she has time for herself, giving herself permission to take that time for herself without feeling guilty, asking others to spend time with him, making more decisions on her own, and doing things she has not done before. She no longer tries to carry on a conversation with him and picks what she says strategically. At the end of the day, she reminds herself of the goodness of the day rather than the challenges. She often tells Don she loves him and praises him for what he does well which balances the inevitable disagreements and less than positive verbal exchanges they have. Finally, she identifies what she wants to accomplish in the day for herself and commits to completing them.
Guideline 9 – Carol replaced her very stern unforgiving inner-critic who was unrelenting in its criticism of her every decision with an inner coach. In this way, she was able to be more compassionate with herself. This coach supported her efforts, motivated her to keep trying even when she wasn’t 100% successful, and helped her figure out what was standing in the way of her being the person she wanted to be. She thought of it as her attitude’s personal trainer. A good example is that when she feels discouraged or thinks “I can’t do this,” her inner coach asks her what she needs and what she can do right now to move past those feelings.
Guideline 10 – Carol strives to maintain an upbeat outlook. She quickly realized that feeling sorry for herself and seeing herself as a victim was not helpful nor was asking herself “why me?” or “what did I do to deserve this?” The truth is that she chose to take on a very challenging task and at times it does seem overwhelming. That is the reality. She keeps the words of Joyce Meyer and Walter Anderson in mind. Joyce says “Feeling sorry for ourselves is the most useless waste of energy on the planet. It does absolutely no good. We can’t let our circumstances or what others do or don’t do control us. We can decide to be happy regardless.” Walter says “Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have—life itself.” Carol’s new approach is to take charge, acknowledge she will make mistakes, seek help, and to set herself up for success by learning how to best manage her situation. Don sometimes feels sorry for himself, but quickly forgets and Carol bolsters him by telling him she loves him and that she will help him.
Whether you are living with and caring for someone experiencing mental or physical disabilities, Carol’s story and the lessons she learned may be of value as you traverse that path. Give them a try and see what you think.