How Expectations Can Make Caregiving More Difficult

Dr. Lee-Fay Low is the author of “Live and Laugh with Dementia” (Exisle Publishing 2014). For more information, visit www.livelaughdementia.com. 

How Expectations Can Make Caregiving More Difficult

I have a couple of immutable rules that are always in my head: “To show people I love them, I must cook for them” and “Efficiency is next to Godliness.” Most of the time these rules help in my life; they insure that we have lots of wonderful meals with friends and family, and I get lots of things done. But sometimes these rules interfere with my life.

For instance when I’m sick, but insist on getting out of bed to make my daughter’s birthday cake rather than buying one. Or when I rather irrationally try and get my 2 and 4 year old to be efficient at the supermarket, rather than taking the time to enjoy being with them, even if that means the shopping takes much longer. I find letting go of these rules really difficult, even though it makes sense to do so.

A group of caregivers of people with dementia recently taught me that mental ‘rules,’ or expectations, have a big influence on how they care for and react to the person with dementia. As a psychologist, I was impressed by how these caregivers had figured out their unwritten mental rules, and then rewritten them. The stories below are based on what they told me.

The Caregiver’s Own Mental Rules

Jerry and Christine’s story:

Jerry said that he found that his own expectations of what good care was often caused him unnecessary stress: “I was trying to get Christine into the shower every day, and it was a struggle each time. I started to dread shower time and obviously Christine was really distressed.”

“The turning point was when I realized it was ok for Christine to not shower every day, and that I wasn’t falling down on my responsibilities if this happened. Now she showers once a week and we wash in the sink the other days.”

Angela and Steve’s story:

Angela talked about how she always felt guilty when she put her husband Steve in front of the television. “I’ve read about how we should be keeping people with dementia mentally and physically active, and I felt bad when I needed to stick him in front of the TV so I could get something done.”

“Once I let go of the idea that I had to do everything for Steve all the time, and understood that part of being a good caregiver is looking after myself, I was much more comfortable when I used the TV to get some time to myself.”

Society’s Rules and Expectations

Jerry and Christine’s story:

“When I took Christine out, she would often mistakenly think that she knew people and rush up and give them a big hug. I’d be pushing the supermarket trolley and turn around and she would be off hugging a stranger. I was really embarrassed, and embarrassed for Christine, though she didn’t really seemed bothered.”

“It got so bad that I almost stopped taking her out, but I couldn’t stand the idea of her being cooped up at home alone either. So now I apologize and explain to the stranger that Christine’s memory is very bad and that she thought they were someone else. Almost everyone has been really understanding and friendly, and this makes Christine happy.”

Angela and Steve’s story:

Angela talked about how her daughter’s expectations about how their dad should be cared for made her job more difficult. “When we went out with my daughter, she expected their dad to be dressed like he always has — buttoned shirt, dress trousers and leather shoes. But Steve couldn’t manage buttons or shoelaces anymore which meant that I had to dress him, which he didn’t like.”

“One day Emily arrived early and I asked her to help Steve with his clothes. Then she realized how difficult it was to do such a simple thing. She went out and bought Steve some smart polo shirts, elastic-waisted trousers and velcroed shoes — all clothes he can put on himself!”

Relaxing Mental Rules

People with dementia often seem to operate outside the usual rules of society and lose their ability to be rational in their behavior. To cope and compensate, family might need to be even more flexible in their mental rules. To do this, first recognize what that mental rule is, and then logically work through what would happen if the rule was sometimes broken. Would it be catastrophic? Usually not.

I know this is easy for me to write, but harder to put into practice.

Now I’m off to cook for the extended family — in the most efficient way possible, of course!

Excerpt from Book

Live And Laugh With Dementia Cover

(An extract from “Live and Laugh with Dementia” by Lee Fay Low – Exisle Publishing, 2014.)

It Takes a Village….

The saying traditionally goes that it takes a village to bring up a child. I believe that it takes a village to care for an elder. The more people involved in the life of the person with dementia, the more opportunities they have to be stimulated, to interact and engage, and the more people there are to emotionally support and love them and remind them of who they are.

Telling Friends and Family About a Diagnosis of Dementia

We can think about our social network as a series of concentric circles, like the rings of an onion, with ourselves in the center. The circle immediately around us holds the people nearest and dearest to us; this may be a spouse and/or best friend or friends. The circle around that holds good friends you can talk to about personal things and call on in times of need; there might be five to ten people in this second circle. The third circle holds more remote friends with whom you may spend social time but not necessarily confide in, and there could be five to 50 people in this circle. The outermost circle contains acquaintances whose names you might know but with whom you don’t spend meaningful social time. Friends will drift in and out of circles over time.

Live And Laugh With Dementia

People with dementia and their caregivers usually tell the people in the inner circles of friendship first about the diagnosis of dementia. Some caregivers then tell everyone in the social network, whereas others don’t spread the news as widely.

Disclosing the diagnosis may be difficult for some people with dementia and their caregivers, especially for private people. However, telling people about the diagnosis of dementia makes it easier to keep friendships. Being honest means that you don’t have to cover up memory difficulties or unusual behavior. Once friends know, many will make allowances, making a special effort to be accommodating to routines and what might work better for the person with dementia and their carer. They are also more understanding that the person with dementia may be less able to reciprocate in the friendship than they used to. Telling others does involve the risk that they will stop being friends, but if this is the case they may have stopped being friends when they noticed the person with dementia’s symptoms irrespective of whether the diagnosis was disclosed.

If you’ve talked about the diagnosis, this opens the door to having a conversation about the symptoms of the person with dementia, and discussion about how he could be treated. It is important to have these conversations with family as well. Share with your friends and family the specific difficulties with memory or thinking that the person has (the checklist in Chapter 1 will help you) and any behaviors that are unusual for that person. Specific information about symptoms rather than generic descriptions of dementia are more helpful. You may think that these difficulties are obvious, but their extent might not be as apparent to others who don’t see them every day. Remind your friends and family also that in spite of the symptoms, the person with dementia is still the same person they were and continues to enjoy the company of others (if this is true).

Explain that if the person with dementia is in a group they might not want to be the focus of attention, preferring instead to sit and take in the scene around them. Ask relatives to take time to give the person one-on-one attention, even at group gatherings. Ask them to share an experience that they have had and then to listen to the person.

It is never too late to have this conversation with friends. True friends will understand if you phone them after several years and apologize for losing touch and explain the reasons why.

Asking Family to Be More Involved

Some families of people with dementia find that the illness brings them closer emotionally or in more frequent contact. However, there may be a family member who the rest of the family feels is not pulling their weight in terms of contributing to the person with dementia’s life and care. This family member might not know their help is needed; or being with the person with dementia could make them feel uncomfortable. They might not see it as their responsibility to help or they may have circumstances that make it more difficult to contribute to the care of the person with dementia. In order for the situation to change, someone will need to let the person know that their help is needed. Sometimes this conversation is easy. In other instances, because of the family history or the person’s personality, or a whole combination of different factors, this conversation can be more difficult. However, if we avoid having the conversation the situation will probably not change!

Pick up a copy of Dr. Lee Fay Low’s book, “Live and Laugh with Dementia,” and let us know what you think in the comments below.

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Please leave your thoughts and comments

  • Mikel Parkes

    Thank you!! This has helped me greatly!

  • Christina Motta

    Frontal lateral Dementia is a litle different of Alzeimers, or we can wait the same symtoms?
    My mom is in her home and now I am caregiven her.
    My rules are, NO rules! Because each day is a new journey….
    I decided that I ask her first….are you hungry? If she says…NO, I do not force her…I did before and was a disaster! Now, I respect her wishes…want to sleep at noon? Ok!
    But what can I wait for the future? I am in the dark.

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