As the stage of Alzheimer’s or dementia progresses, our loved one would no longer be able to comprehend or understand the meaning of dignity and privacy. They would no longer feel humiliation or shame if their uncovered body is exposed in public, nor would they feel embarassment when their diapers are completely soiled and the contents leaked out and causes stench.
When this happens, the role of preserving their dignity would now fully rest on the shoulders of the caregiver. I have seen in support groups that adult children and spouses become very distressed when they see it happening to their loved ones with dementia/Alzheimer’s. Especially when their loved ones used to be someone who valued outer appearance, always well put together, dignified and intelligent
Actually, all we need to do is to understand that their position is the same as a baby, infant, toddler or a young child who do not yet understand what is the meaning of dignity. And it completely depends on the adults caring for them to ensure the baby’s dignity is preserved. Ie, ensure their body especially private parts are not being exposed in public, their diapers are not soiled and to wipe and clean them off when they smear food all over their face and clothings.
At this stage of their life, they are very similar to a grown baby. The only difference is that they aged backwards while the baby would eventually grow up to learn conventions of society. If we do not hesitate when it comes to preserving the dignity of babies and small children, the same should be extended to our parents or loved ones who now have Alzheimer’s.
I must admit when I was younger, I did not understand why I often see young parents with a backpack and a carry on bags with them on top of having to carry a baby. This is especially when you see a young mother without the help of an adult, trying to manage a toddler (strapped to her on a baby strap), with backpack, diaper bags and two more young children. It is admirable how she could balance so much of stuff along with her three children.
But now, I understand what are the backpack and additional bags are for. And I myself carry them along too whenever I needed to take my mom out- even during the earlier stage when my mom was still mobile. And now, the only place my mom goes to is to the hospital for her checkups- and I still have to carry bags with me. The bags contained diapers, baby wipes, extra blankets, small pillow, and tube feeding items along with other things (which I would list in a separate blog post).
Here are some of the things I would do to preserve my mom’s dignity
(Note: I do that even when I am in the room alone with her and no one else is watching)
1. Ensure her clothings are properly worn
That means her blouse is properly worn to cover her top body (mom no longer wears a bra), while her pants cover up her adult diapers.
If there are any torn clothings it should be mended. Or to set aside some sets of clothings and socks to be used for going out.
2. Face and finger nails are cut and maintained
Hair are nicely combed, wipe her face to make sure it does not look oily and any discharge from the eyes, nose and mouth are cleaned. Nails are trimmed and clean. If their skin is dry and flaky, apply mosturizer cream after their bath.
3. Diapers are changed
The one thing good about tube feeding is that we can manage the feeding schedule and fluid volume. If the meal or feeding time and fluid intake are similar each day, after a while we would know when the diapers are likely to be soiled. At least it has been from my experience.
We need to change it once it is soiled and before it overflows to the bedsheets and matress. No matter how tired I am, I would change it because it is easier to change than to have to take out and launder soiled bedsheets constantly. Also we avoid the room having a stench.
As now they themselves do not understand anymore, it is our role to ensure their dignity is well preserved and maintained.
4. Unruly behaviour
During the earlier stage of my mom’s Alzheimer’s, she used to be a little hard to manage during hospital visits or when we go to any crowded places. It is common to have to wait for the doctor or specialists and she would get extremely agitated and kept asking what we were doing there and insisted to go home…. like every 10 minutes or so. Each time we need to take blood, we needed a few nurses just to hold her down. But the moment she was wheeled into the doctor’s room, and the doctor was friendly and attentive, her behaviour would change. If she had to be hospitalized, she would be waking me up every 30 minutes or so complaining what she was doing there.
Most important when dealing with difficulty behaviour is to remain calm and patient. Do not cause a scene or argue back with them. When we do that, most people would judge not them but us. It would be us who lose our dignity because we are younger and would be expected to have better self control.
Now, she is in later stages of Alzheimers and she no longer exhibit unruly behaviour. When she goes to hospital for checkup, she is placed on a stretcher bed where she would sleep blissfully amidst noisy surroundings without a care in the world.
I realized through caring for my mom that they are very sensitive to the caregiver’s vibe. It is almost as if while they lose their cognitive function, they are sensitive to the vibes of people and the environment surrounding them. If they are constantly in the environment where they felt loved, protected and comfortable, they would tend to calm down easily and would not display aggressive behaviour. I found out in the early stages there is no point arguing with her or getting angry because it would make her behaviour worse.
Maintaining their dignity
If we have no hesitation to do it for a child, the same should be extended to our loved ones, especially in cases were things become out of their control. If they are our parents, it was something they have done for us as well and what an honor to have the opportunity to repay their kindness. If we are caring for our spouse, it is also a time to treasure and honor them for all they have done for us….. and often we know deep down, if the position was to be reversed, they would have probably done the same for us.