Dementia takes away a sense of self—but we can give it back (part 5 of 5)

apricot tulipsThe fifth step we can take is in helping our loved ones with dementia retain a sense of self is to give them opportunities to be kind and helpful. There is nothing more uplifting and effective at making us feel better about ourselves than being able to do something for someone else.

When we create opportunities for our loved ones to give something to us or do something for us, we are helping them achieve contentment and well-being.

Give a chance to be helpful.

Having dementia means becoming less able not only to do things for ourselves but also for others. And yet, being able to offer something of value in our relationships is essential for us to experience quality of life.

Look for ways to make it possible for your loved one or client to be helpful, even though losing rational thought and memory makes it increasingly difficult to perform tasks.

One of the skills lost in rational thought is being able to perceive sequences or steps in a process. This means that your loved one will become unable to do such tasks as making coffee, setting the table, or washing a load of laundry. They will not, however, become unable to perform single steps with a little gentle direction. Although he cannot make coffee alone, you might ask for help in setting out or filling two mugs, or carrying them to the table. Although she might be unable to set the table entirely, she may be able to put a plate at each place. Folding a laundry basket of tea towels or facecloths is a task that makes many people feel helpful and needed.

Recently, one of our clients had to transition from home into a memory care facility. We were careful to arrange for her DAWN caregiver to continue to visit her there. Her family arranged to take turns visiting her each day. However, when they took her to her new home she was delighted. She had been a nurse for many years and, upon walking inside, she looked around and said, “Wonderful – thank you for giving me my job back!” Her transition from home to care facility was painless because she believed that she had been appointed as the administrative nurse to oversee the care of her new housemates.

Give a chance to give.

Having dementia means being the constant recipient of attention and assistance, yet we all need to be able to give as well as receive. Even if it is only a hug or a listening ear, we need to be careful to give those experiencing dementia the opportunity to give back to us.

At DAWN, when we see that a client needs a hug, we say we need one and ask her to give one to us. She gets the hug and physical reassurance she needs, but she also gets the pleasure of having helped someone else. During the holiday season, we carefully make the selection and giving of gifts a part of our care plans, so that our clients can enjoy being gracious and generous. Giving is an essential part of maintaining and enjoying a sense of well-being.

 

This concludes my five-part series on how we can help our loved ones and clients continue to retain a sense of self, despite dementia. I hope it’s helped you lower your stress as a caregiver and increase your loved one’s sense of wellbeing.


Dementia takes away a sense of self—but we can give it back (part 4 of 5)

lilac flowers with sun shining through themThe fourth way we can help our loved ones retain a sense of self despite dementia is to destigmatize forgetfulness and confusion through making it a shared experience.

Ongoing loss of memory and rational thought is unavoidable and incurable (at present) for people with dementia. We can’t change that for them, but we can make the experience less lonely and more comfortable. We can be teammates rather than superiors.

Be a little forgetful yourself.

There’s nothing worse than always being the person in the wrong—the person who loses things and forgets appointments and is confused about what’s going on. We can’t help our loved ones or clients develop a better memory. Reminding them or jogging their memories won’t bring back the skills that dementia is taking away.

Instead, we can make forgetfulness and confusion into something that is a normal part of daily life rather than something that is upsetting. When it’s time to go out, say what you might be thinking internally out loud: “Hmm, now where did I leave my keys? Not in my purse—maybe in the kitchen? I’d better go and look.” When an appointment is overlooked or a deadline missed, rather than being upset and dismayed by the error, react to it with complacency, as a normal part of life. After all, if we’re living or working with someone who has dementia, we do need to accept such mistakes as inevitable and normal.

Blame a third-party.

When our loved ones or clients lack rational thought, we can’t expect them to understand our explanations for why they should or shouldn’t do something. Often our clients lose their understanding of hygiene or sanitation. It becomes very difficult to get them to wash their hands or take showers, because understanding that germs can cause sickness or poor hygiene can cause skin issues requires the ability to see cause and effect, as well as sequence or process—rational thought skills they are losing or have already lost.

Instead of attempting to change someone’s behavior with explanations even though they lack the ability to use analysis, change the situation into something you experience together and can commiserate about.

Here, we’re always looking for a distant third party to blame for causing us to do something. We wash our hands with our clients because we don’t want to catch the flu from “strangers” who also use the bathroom. We get out of the hot tub together because “the insurance company” enforces a 15-minute rule. We take our vitamins or eat our vegetables because we don’t want the doctor to be concerned.

When someone lacks rational thought, you don’t have to propose entirely logical reasons for doing something. What’s more important is that you and your companion with dementia are both required to do whatever it is, so that you can act as teammates in complying.

Destigmatizing forgetfulness and mistakes is a very valuable way to help our loved ones retain a sense of self, despite dementia.


Dementia takes away a sense of self—but we can give it back (part 3 of 5)

yellow tulips with red stripes in the rainThe third step in helping our loved ones retain a sense of self despite dementia is to balance safety with their need for autonomy and dignity.

In his book Being Mortal, Dr. Atul Gawande points out that in this country we seem to confuse prolonging life with preserving quality of life when someone is experiencing an incurable condition. As caregivers, we need to be careful that we do not forget that retaining a sense of self and well-being is vitally important when our loved ones are experiencing dementia.

Become an accommodator.

The third way that we can preserve a sense of self for our loved ones and clients experiencing dementia is by being careful that we respect the things that are a part of their personalities and the earlier life experiences that have shaped their preferences.

Recognize elderhood.

The people who develop dementia are adults and usually our elders. They have lived for decades with the freedoms and responsibilities that accompany adulthood. I cringe when I hear someone say that people with dementia are like children or speak to them in patronizing tones. Losing rational thought and memory does not make someone into a child. Dementia impacts the ability to communicate and retain information, not maturity. Our loved ones continue to be our peers and our elders and we should be careful to treat them as such.

Respect beliefs and cultural preferences.

We each arrive at elderhood with a very personal array of preferences, beliefs, values and understandings. As caregivers of people who have dementia, it’s important that we learn about these things that shape who our loved one or client is. There will be some beliefs that we cannot agree with, but we need to be aware of them so we can avoid confrontations. There will be other things we can support, such as cultural and religious beliefs. Helping someone retain a sense of self includes helping them keep in contact with the activities, habits and preferences that have shaped their lives.

Support personality traits.

When someone is a night owl, we cannot expect them to be ready for breakfast first thing in the morning, nor can we expect them to fall asleep in the early evening. Some people need silence while others need to have a television playing in the background before they can relax. One person needs to eat slowly in a peaceful setting while another does better standing in the kitchen with commotion all around. When we pay attention to these kinds of personality traits, and accommodate them, we increase quality of life for our loved ones and reduce our own stress.

 

Providing person-directed care means getting to know as much as we can about the person who is experiencing dementia. We should treat them respectfully, as adults and our elders, but also with admiration. It takes a lot of courage and tenacity to negotiate daily life without memory or rational thought.