Transitions from one life stage to another are always complicated. As teenagers become adults, their parents maintain a delicate balance between continued supervision and granting increasing responsibility. The process is rarely smooth. It goes in fits and starts, with spectacular failures interspersed with glowing successes. And, it’s the same with dementia.

The transition from being a fully capable elder to someone experiencing dementia is very stressful. It’s not a smooth ride for elders or their families. Dementia begins imperceptibly, at first looking like nothing more than the unreliable memory of normal aging. When family members visit for a weekend, they often don’t realize the true degree of confusion their loved one is coping with. It’s hard to know whether the house is dirty because of low energy, changing preferences, fading eyesight, or loss of the ability to understand the need for basic hygiene.

Most people experiencing dementia can mask their deeper problems when family visit for only a day or two. If you really want to know how well a parent or loved one is functioning in the home, stay at least four days. On the fourth day, coping skills will begin to falter and you will see the actual level of performance. Understand that people in the earlier stages of dementia can rise to the occasion and function at a much higher level when faced with the risk of a visit to the doctor or a forced move. This postpones an accurate diagnosis and puts safety at risk.

Worse, people experiencing dementia are often not aware of their growing cognitive impairments.  Usually, our clients are aware that they have memory problems, but remain convinced that their decision-making abilities and judgment are just fine. As caregivers, we find ways to keep them safe, even though they think we are meddling unnecessarily.  

This is one of the most difficult tasks families and dementia caregivers face: balancing safety needs with their loved ones’ desire to make their own choices. Becoming impaired by dementia does not take away the desire to live life in a way that feels fulfilling. It just takes away the ability to do so.

It’s tempting to think that moving a confused parent into an assisted living facility or memory care unit will solve all safety problems, but it won’t. Moving a loved one with dementia merely exchanges one set of problems for another. If you consider the dangers inherent in housing a large number of cognitively impaired people in a building with constant staff turnover, keeping someone at home with personalized care is safer. It’s not possible to keep everyone at home, but in a private home it is easier to control the environment and ensure personal safety, given proper supervision and support.

When people can continue to live at home in familiar surroundings, muscle memory and automatic thinking scripts (the mindlessness tools) help them carry on with basic functions, like finding a snack in the kitchen or getting to the bathroom in the night. And, being at home with caregivers who ensure continued involvement in favorite activities preserves quality of life and a sense of selfhood longer than participating in group activities aimed at the average senior’s needs.  

Next week, let’s take a look at some techniques for providing care that will preserve a sense of independence and selfhood, while maintaining safety.

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4 comments

  1. Your dawn method is very helpful to me as the caretaker wife of my 82 year old husband. I am 67 and able to take care of him but sometimes I feel cheated from activities because I don’t feel good leaving him and really miss him if I do because we have always done stuff together

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    1. hi Nancy,

      I’m so glad it’s been helpful. I got involved with dementia care originally because I didn’t want a neighbor to have to leave her home — and ever since I’ve been trying to figure out simpler ways to understand what our loved ones are experiencing with dementia, so we can still enjoy life together. My neighbor became my dear friend. She’s now in an adult family home but I still get to spend time with her.

      Do you have other family members, or friends, who can help? You need time to yourself, much as you love him. Here, when we have a client at home with a spouse, we try to arrange a care schedule that gives the spouse time away from home alone and also time home alone.

      Right now I’m almost finished with the publishing process on a short book about the pattern of loss in dementia — and particularly about the skills that aren’t lost. I’ve called it ‘The Dementia Handbook: How to Provide Dementia Care at Home.’ Once it’s available on Amazon we’ll put a note on the website.

      The other thing I’m doing this spring is having my classes videoed so we can put them on the website. I teach them here in person, and over the web using webex.com, but they will be so much more accessible if we can get them taped. 🙂

      My heart goes out to you — and my greatest admiration! Thank you for writing to me.

      best regards,
      Judy

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      1. I am worried if I leave him he will think I can’t handle the dementia . He always asks me if I have had a good day

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  2. People who are experiencing dementia are still very able to not only feel their own feelings but also to pick up on ours. So it’s important to reassure him openly and often, to express to him that you are so very happy to be with him, but also to express to him how glad you are to see him when you come back from being away. If you come back feeling guilty or worried, he will pick up on your unhappiness and misinterpret it — thinking it is due to coming back to him rather than having been away from him. This is because he does not have rational thought to come to a more accurate conclusion.

    Judy

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