Mom was doing so well – still successfully caring for herself. Then one day, you notice a significant change in her behaviour and mood. You book an appointment with her doctor, only to find out that her actions are simply due to the progressive nature of her dementia.
You knew that things would change, but you didn’t realize how soon or how significantly. It’s one thing to be told how dementia will progress, but it’s another to watch your loved one slowly deteriorate. How do you prepare for the next step? How do you adapt?
If you can relate to this scenario, I understand how overwhelming it can be. It’s important to note that you’re not alone and that help is available. Although everyone is unique in terms of their symptoms and level of support, there are three key stages you should be aware of as you care for your loved one.
When you better understand these stages and what you can expect, you can improve quality of life for both yourself and the individual you’re caring for. Caregivers are a vital component in the lives of these individuals, providing dignity and critical support. Please be aware of the following stages so that you’re able to make more informed decisions.
First stage: Dignity through autonomy
Within the first stage, you’ll be concerned with your loved one’s independence, aiming to preserve functioning, as you continue to focus on autonomy support. As new symptoms surface and the confusion grows greater, there will be some things that your loved one can no longer do. In order to preserve their independence, you will need to offer support and assistance.
At this point, your loved one will suffer from a range of cognitive dysfunctions, including a lack of insight, poor judgement and reasoning, diminishing memory, reduced ability to plan, and difficulty expressing empathy. Although their condition is out of your control in terms of progression, the old saying, use it or you’ll lose it, does have some merit here.
Don’t focus on what they can’t do, focus on what they’re still capable of doing. Sure, you may need to provide support, but if there are still certain tasks they can perform, encourage them. If you simply do everything for them without encouraging their involvement, the skills which are still intact can be lost.
Here are a few tips regarding self-care and the support of autonomy:
- Keep items they’d need out, so that they’re in plain sight. At this stage, if a comb isn’t visible, they’ll more than likely forget to brush their hair. Don’t tuck away items that they require on a daily basis in a drawer, this isn’t helpful to them.
- You can post lists around the house, especially regarding self-care and grooming. Hang a ‘to-do’ list in the bathroom, listing the tasks that need to be completed. For example, brush teeth and comb hair.
- Break down tasks into simpler steps. For example, meal time may seem self-explanatory to you or me, however, for someone with dementia, it can be confusing. If you just say, it’s time to eat, please sit down, then do everything for them, they’ll lose specific skills. Take a few extra minutes and encourage them. To pour a glass of milk – instruct them to pick up the carton, take off the lid, grab their glass, and pour. This not only preserves skills, but can also create a sense of accomplishment, contributing to a higher quality of life.
Second Stage: Dignity through safety
As your loved one’s dementia progresses, your attention will shift to dignity through safety. In a perfect world, all caregivers would be able to care for their loved ones without needing to make significant changes in living arrangements. The reality is, as dementia progresses, safety becomes a major concern.
It’s not uncommon for individuals with dementia to fall, accidentally start fires, lock themselves into a room, or struggle with meeting their nutritional needs. You can implement some helpful devices and assistive measures at first, however, if you find that your loved one’s safety is threatened, it will be important to explore your options.
Once caregivers become concerned with the safety of those they’re caring for, it’s typically in everyone’s best interest to look for a safer environment. Even if you safety-proof your home, you may not be equipped to meet their changing needs. You may also find that your own personal health or relationships are at risk.
There are plenty of options and there’s no shame in asking for help. In fact, seeking assistance can essentially improve the quality of life for both you and your loved one. You will also reduce your risk of caregiver burnout. Whether you seek a nursing home, 24-hour care at home, or create a roster system with family members, there are options. Do not wait until you’re so overwhelmed and worried that you fall ill, ask for help and take action as soon as safety is becoming a clear concern.
Third Stage: Dignity through comfort
Once you reach this stage, it will mean that your loved one is in the later stages of dementia. At this point, you’ll need to focus on a palliative approach to care, managing and controlling symptoms. Basic comfort measures will need to be practiced, including feeding, sitting in the sunlight, washing, and having someone talk to them or stroke their hand.
Based on the progressive nature of this condition, cognitive functioning will be severely affected. This will cause significant impairments and psychiatric issues will generally be expressed. In many cases, individuals will cry out or be agitated, yet they cannot tell caregivers what’s wrong.
In some cases, they may be displaying behavioral issues or be experiencing delusions, they may also be in pain. If they appear to be in distress, it’s critical to find out the root cause of their anxiety, fear, or discomfort. This will allow you to minimize distressing symptoms. Once again, this is an area that may require professional assistance, as individuals are specifically trained to provide comfort care.
Dementia is a journey in which millions of families take and although you may feel alone, you’re not. There are so many individuals willing to provide physical, psychological, emotional, and social support. You can also seek financial assistance through specific government programs and organizations.
If you’re currently seeking 24-hour care, please do not hesitate to contact us regarding any questions or concerns.
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