Aging Parents With Dementia: Preparing For The Long Goodbye

It seems that we hear of yet another family facing dementia just about every day at AgingParents.com. They want to understand options about how to pay for care, what to do with sibling fights about the elders, and they seek answers many related legal questions. In the midst of this, they are trying to cope with the sadness. They see a parent losing ground and know it’s the long goodbye.

Dementia, in its most common form, Alzheimer’s disease, can move slowly over years, or it can create sudden, unexplained declines. However it manifests, it is progressive. Spouses and adult children must continually adapt to whatever shows up in the aging loved one, and it’s a struggle. An elder with dementia behaves differently from what the family was used to seeing. The family may react to what they see with anger, dismay, fear, and their own depression. Some families have gotten guidance from the elder’s healthcare providers. But what I observe more often is that no one is telling the family how to address the caregiving issues and how to manage their own reactions to dementia and the changes it brings.

It is important to know where to go for guidance if you know or suspect that a loved one or your own aging parent has dementia. The journey is often a long one and seeing your aging parent decline is never easy. It does not matter if anyone has given the elder a formal diagnosis of any particular kind of dementia. It is helpful to know but even if you do not yet have specifics, you can still find the resources to help you manage as best you can.

We recommend as a first resource for any family caregiver the website for the Alzheimer’s Association. You will learn the 10 warning signs that signal the disease, even if no doctor has yet made a diagnosis. There is a Help and Support menu on the site that directs you to groups, places to get your questions answered and information about what you may expect on the path ahead. The Alzheimer’s Association does community presentations, invites speakers and those in the caregiving role and allows for question-and-answer sessions. It is a worldwide research entity as well.

Another excellent resource is the Family Caregiver Alliance. There you can get a wide range of caregiver help, including caregiving tips, information and encouragement about taking care of yourself as a caregiver, connections to community organizations and agencies, and overviews of health conditions. The emphasis is on helping those who are doing the family caregiving job or supervising those who do.

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Any place you reach out for support in the journey of the long goodbye can help you. Millions of people share the experience of caregiving, as there are over six million folks diagnosed with Alzheimer’s disease in the U.S. alone. I suspect, based on conversations with families of elders over the last 15 years, that there are many more who simply have not been formally diagnosed but who present all the warning signs. Somehow, the words “Alzheimer’s disease” terrify so much that some individuals do not want to hear them. “Dementia” may feel less threatening as a descriptor, but the effect on the person with the disease is the same no matter how you label it. And the effect on the family can be just as burdensome with or without a formal name.

Some kinds of dementia require different kinds of medications and strategy from other kinds and that is why a proper diagnosis can be helpful. For example, there is Lewy Body Dementia (with a particular kind of deposit in the brain) which needs a specific plan to manage the associated behavior changes. The medications used with this kind are different from those used with Alzheimer’s disease. By medications, I do not refer to anything that slows or stops the disease process. We have no medications that can do that as yet! Rather, medications can help families manage difficult and aggressive behavior, facilitate calmness, and assist with outbursts. They can be hugely important when hard-to-handle behavior changes wreak havoc on the caregivers. Using the right medications can help everyone involved.

The takeaway message is this:

If your loved one demonstrates memory loss that interferes with daily life, that is the first warning sign of dementia. The Alzheimer’s Association website walks you through the other nine warning signs. If these are present, it is important to take it seriously, as we have no cure as yet and the disease will progress no matter what you do. You as a family need to undertake your plans for the long goodbye to your loved one. These include legal, financial, caregiving planning and support for yourself. Treasure the moments of clarity and enjoyment you have with your loved one. He or she will live only in the moment more and more. You have to adapt to getting past other expectations about your aging loved one and about plans for what used to be normal. The dignity of anyone with dementia can be maintained with careful planning. That dignity is what any aging parent deserves. Indeed it is what we all need.

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