Are you caring for a relative who has dementia?
It’s not easy. But there are real-life strategies for dementia caregiving you can try. One of these strategies is understanding that there’s no such thing as a perfect caregiver.
This is important to keep in mind because many caregivers are too hard on themselves. They try to do it all and don’t ask for help until things get too hard.
And sad to say, with a progressive disease like dementia, things will get hard if not harder. Especially with end stage dementia, you’ll have to seriously think about special care.
That said, let’s delve into the 7 reasons why special care is a must for patients with end-stage or end of life dementia.
1. It’s a Terminal Disease
Many people think of dementia as a memory condition – a disorder that accompanies an aging mind. And while that’s descriptive of the disease’s early stages, experts say it’s more than that.
Dementia is a terminal disease like some cancers. It’s not just a mental ailment. A dementia patient can die from this disease. This is why palliative care is a must.
People have to recalibrate their thinking of what dementia is, more so when it’s in the advanced stages. With advanced dementia, it’s not a single condition anymore but a collection of diseases. These include eating and breathing problems, pneumonia, and pain.
2. Communication Will Be Difficult
Supportive care is harder to give when you don’t know what your loved one with end-stage dementia wants or needs. You can guess to the best of your abilities. But if the patient cannot communicate in a clear manner what he or she wants, how can you provide it?
Why is the patient not eating? Is it because he or she’s not hungry? Or is it because of something else?
Is the patient in pain? Why is he or she agitated? It’s time to consider assisted living dementia care if you’re finding it harder or impossible to communicate with the patient.
3. There Is No Status Quo
The care you’re giving now to a family member who has dementia may not be enough when the disease is in its final stages. In fact, you’ll have to assess and re-assess the patient’s care needs often. And you’ll have to be ready to modify your caregiving strategies as the disease progresses.
One of the best ways to do this is to accept that you may need professional help in a residential setting. The staff in a memory care facility will have the necessary experience needed, especially with patients in their last days or weeks of life.
4. Uncertainty Is Certain
Even if you’ve prepared yourself for the inevitable – that your loved one will die, you can’t know exactly when that will happen. End of life care for patients with dementia could mean weeks or months or years.
But no matter how long it takes, you have to do everything you can so that the patient lives the best life he or she can during that time. Often, that means realizing that you may not be the best person to provide that end of life care.
And that’s okay because you have to put their physical, emotional, and spiritual needs above yours. It also doesn’t mean you’ll be removing yourself completely from that scenario. Remember that end of life care should always involve you, the patient’s GP, and the professional staff taking care of the patient.
5. Special Care Requires Special Experience
You’ve read all about end stage dementia signs. But how confident are you that you’ll be able to address those signs and give the patient the comfort and relief he or she needs?
Unless you’ve had training, it’s not so easy recognizing if a person with dementia is experiencing pain. And that pain could come from a number of different conditions including infections, ulcers, cancer, and so on.
With communication being a problem, there will come a point when the patient will no longer be able to tell you if he or she is in pain or discomfort. But trained professionals have ways of knowing if this is the case.
They can use a pain assessment tool for example. Or they could check the patient’s medical history to see if there’s a need to treat underlying conditions. They will also use therapies such as massage, aromatherapy, etc. to make sure the patient is comfortable and reduce his or her pain.
6. You Also Need to Take Care of You
Dementia patients in the middle stages of dementia need 24-hour supervision. As the disease progresses, their care needs will increase. And unless you’re superhuman, it’s going to take a toll on you sooner or later.
When that happens, caring will become even more difficult. You might forget about all the positive things about caring because you’re physically and mentally exhausted. It’s not uncommon for carers to resent the people they’re caring for and then feel super guilty right after.
Leaving your loved one with dementia in someone else’s care isn’t giving up. It’s knowing your limits and doing what’s best for the patient. Always remember, you can’t pour from an empty cup.
7. You Need to Be 100% to Make Decisions
When the time comes and your loved one needs aggressive medical care, you’ll need to be of sound mind and body to make the right decisions. This is better if you plan in advance because there are a number of medical care decisions you’ll have to make.
These might include antibiotics, CPR, feeding tubes, and ventilator use. You’ll have to weigh these decisions against the comfort of the patient, more so in his or her last days.
Are the treatments going to be invasive? Will they be painful? These are just some of the things you’ll have to think over when you are asked to make medical decisions in behalf of the patient.
Does Your Loved One Have End Stage Dementia?
And is professional care something you’re considering? We can help.
Learn more about Alzheimer’s Dementia Care here at Seasons. We also encourage you to browse our other articles for more caregiving tips and advice.
If you have other questions or concerns about caring for patients with end stage dementia, don’t hesitate to contact us.