Death might be inevitable but witnessing it is still a harrowing experience. As caregivers, knowing what lies ahead can make it easier for both you and your loved ones.
Watching your loved one deteriorate because of dementia is difficult. End-stage dementia can be even more traumatic to witness. Knowing the signs that a person with dementia is nearing the end of his life is essential because it can help you decide on how to give them the right care to increase the quality of the time they have left. Knowing what to expect can also bring you some comfort.
An important thing to remember is that people with dementia don’t normally die from dementia, but due to other infections that might occur because of their frail state. Some symptoms of end-stage dementia you might notice include a pronounced difficulty in eating and swallowing, incontinence, little or no speech, and limited mobility. During this period, it is even more important that you keep them warm and always supervise them during meal-times so you can react quickly if they choke on something.
Sensory connections are very important at this point. You can bring comfort to the person with end-stage dementia by targeting their senses: hearing, touching, seeing. Touching their hands or giving them a gentle massage can be soothing. To help them relax, play some familiar tunes or even white noise and sounds from nature may help.
During end-stage dementia, you will probably want a professional to monitor the person with dementia more closely, and also have carers who are able to split the task of round-the-clock caregiving. Some of your options at this stage include enrolling your loved one in hospice programmes, engaging palliative care services in your home. This provides the long-term care and support that is needed, while allowing the person with dementia to stay in an environment that is familiar and comfortable for them.
To get started, you may want to get a referral from your doctor, who will also be able to advice on the type of palliative care services that are most suitable for your loved ones. There are various government subsidies to keep palliative care services affordable, so don’t hesitate to speak to a social worker if you have any financial concerns.
Making Choices and Letting Go
When dementia is in its final stages, you might find yourself having to make tough care choices, like weighing in on whether a medicine will bring an improvement to your loved one’s quality of life or if there are serious side effects that warrant any concern.
If you have not managed to talk to your loved one about their preferred end-of-life arrangements, it is worth checking with other family members or close friends if the person with dementia had mentioned anything to them previously.
Towards the end, all you can do is make their time as comfortable as possible, and spend as much time with them as you can. When the time comes, allow yourself the space to grieve, but don’t let your grief tell you that you have not tried hard enough. Some caregivers may also feel relieved when death happens. It is important to know that such feelings are normal. Dealing with death is never easy, but you have cared for them in the best way you could, and that in itself is a wonderful thing.