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Maintaining Dignity for someone with dementia - Part II

Maintaining dignity for someone with dementia is not always easy - understanding the illness affecting them and knowing who they are and how they chose to live their life before dementia are both important elements of maintaining dignity. Below is a continuation of ways to maintain dignity.

Language

In Part I , I mentioned a few of the taboo words at Toghers. I have listed below, some alternatives for these words:

Diaper: underwear, special underwear, padded underwear, adult pads, pad, protective underwear

Bib: Apron

(taking this a step further – I would recommend not just using the word apron – but actually using an apron instead of a bib to protect clothing. You can allow the person to help with meal preparation in ways that they are able to. Setting the table, stirring a mix, tossing a salad – something that helps them feel useful.

Potty: The best approach here is to use the language that they used prior to dementia. Did they say any of these phrases when they needed to use the restroom? I need to use the restroom, I have to pee, I need to tinkle, I’ll be in the powder room. A favorite client from many years ago needed to “tete”. Using the words they are used to using is not only more dignified, it is less confusing.

Therapeutic fibbing

Perhaps one of the most popular terms adopted by the Caregiver Support group I facilitate, is the term, therapeutic fibbing. While I certainly didn’t coin the term – I use it frequently when working with caregivers. It is a concept designed to relieve the guilt that often comes from “lying” to a loved one – even when that lie may very well be the kindest thing you can say to them in that situation. When the person you are caring for has dementia they are struggling with more than just memory loss – they have also lost their ability to use administrative functions – things like logic, rational thought, sequencing and emotional control.

When to use therapeutic fibbing:

~ When telling the truth would invoke pain, anxiety or confusion

~ When the person with dementia is experiencing life in a different “time zone”

Examples of the use of therapeutic fibbing:

The situation:

Your wife wants to drive to the grocery store but you do not believe that she is a safe driver due to her dementia.

Possible solutions involving therapeutic fibs:

~ have a stall switch installed on the car that will not allow her key to start the car

~ hide the keys so that when she tries to use them to start the car they are not available

~ offer to drive her to the store, since you need to go out anyway

The situation if you do NOT use therapeutic fibbing:

You explain to her that the doctor told her she cannot drive, that she lost her license or that you worry about her safety because of her recent accident. She argues, (because she has no recollection of any of these events) accusing you of making things up. She gets increasingly angry and agitated, which makes you upset as well. You either give in and let her drive – putting her and any others out on the road that day in danger OR you spend the rest of the day dealing with the repercussions of her increased anger and anxiety, leaving you feel exhausted and hopeless by the end of the day. You worry about the next time she will want to drive and what you will do then.

Tips for successful outings:

When you care for someone with dementia, it is easy to become isolated, fearing that social situations will be too difficult and stressful. This does not have to be the case – with some planning and thought, an outing can be rewarding and a welcome change of pace from the routine of the day.

Planning an outing

When planning an outing, consider the following factors:

~ How far away is it? Is this a trip that is tolerable or even enjoyable for everyone?

~ Time of day. When does the person you care for tend to be in the best spirits? Is it early morning, lunch time, or after an afternoon nap?

~ Setting: Does the person enjoy watching others – children in particular in a restaurant or park? Or does the person you care for react negatively to ill-behaved children, or extra stimulation? In this case Red Robin might not be the best choice – find a restaurant that appeals to more of an older crowd

~ Food choices: Does the restaurant have foods that are easy to eat, cut etc.?

~ Plan extra time to get there

Informing your loved one:

This varies in each situation. Some people do well with advance notice of an event, others will only grow anxious and ask repeatedly when an event is happening. Others will not remember the event, no matter how many times you remind them. Use your best judgment about how your loved one is able to handle.

Some tips for those who benefit from advance notice of events:

~ Have a calendar with events written on it well in advance, with reminders as the event nears.

Whether the outing is a doctor’s appointment or lunch with a friend – allow plenty of time to get ready and out the door.

Informing others of needs:

I strongly recommend that you prepare others for the special needs of your loved one. This can be done by calling ahead to the restaurant and speaking to the manager, or by discreetly speaking with the host or hostess before you are seated. Toghers has a hostess card that can be customized and printed for just these types of occasions. Hand the card discreetly to the hostess as you enter the restaurant and ask that they also share the information with the server for your table. Information to include on the card includes things like whether you will be ordering for them, how you would like the server to speak to the person you care for, and any special seating needs.

Relax and enjoy

If you are anxious and nervous about things going well, that anxiety will be projected onto the person with dementia. One of the may effects of dementia is the loss of filters – making them much more affected by the emotions of people around them. If you are able to remain calm and anticipate an enjoyable event – you are more likely to be able enjoy yourself.

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Maintaining Dignity for someone with dementia - Part II

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