Battling Alzheimer

Halloween - This day can really throw a person with dementia into quite a tizzy. I mean, those scary masks and glaring jack-o-lanterns can cause the most stable of us to shudder.

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It’s October and according to some retailers, the holidays begin now.

I don’t listen to the marketing hype, but when I am hosting Thanksgiving dinner (which I am not this year), I start thinking about the menu and planning in September. However, it’s hard logistically and emotionally to plan for the holidays when you are caring for someone who has Alzheimer’s disease.

By their very nature, the holidays cause us to look back. In most cases, celebrations and traditions of years gone by determine the tenor of today’s customs and rituals. For many of us, the holiday season begins with talking to our loved ones, planning where celebrations will be and what they will entail. We speak the plans for the upcoming holidays, but what we don’t say, what goes unspoken is the foundation upon which those plans are made. Here is where the friction comes in. Looking back is fine, but looking forward is scary. Your mom doesn’t remember the traditions that she couldn’t live without. Your dad is agitated by the very lights that he used to meticulously string on the Christmas tree; today, he couldn’t pour a cup of hot chocolate, much less man the omelet station for the traditional holiday brunch.

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As your loved one comes to the end stages of Alzheimer’s disease, you will have to make some very difficult decisions. Over the next few days, I’m going to talk about hospice care, what it is and isn’t. The myths and misconceptions, the advantages/disadvantages of getting into hospice and explain some of the services provided under the hospice benefit. First, a definition from Hospice Foundation of America.

Hospice is a special concept of care designed to provide comfort and support to patients and their families when a life-limiting illness no longer responds to cure-oriented treatments.Most people are not aware that hospice care is a benefit of Medicare Part A. Some hospice workers refer to it as “Medicare’s best kept secret.” Please see my post entitled Medicare Made Simple for more information about Medicare. According to the Department of Health and Human Services here are some important facts about hospice care:

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When we were kids, we used to put our hands over our ears and hum loudly or say, “I can’t hear you.”  It was our way of telling the other child who was speaking that we were not interested in, and would not listen to whatever they had to say. 

Then there’s my youngest son.  He covers his face with his favorite blanket.  That’s his way of “hiding.”  He figures, if he can’t see me, then I can’t see him.

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“I don’t want to be in a nursing home,” my grandmother said. She didn’t say it often, because she knew her children had promised not to put her in one, and she knew that if they did, she couldn’t do much about it. Like my grandmother, most Alzheimer’s patients would rather live at home. Moving is a risk factor that can lead to death, as people lose hope because the old familiar places are gone.

Unfortunately, many private homes are not good places for Alzheimer’s patients and even for many other elderly people. There may be unavoidable stairs inside, dangerous steps outside, poor lighting, inefficient bathrooms, etc.

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Alzheimer’s disease often brings stress and guilt. Not necessarily for the patient. Not for the professional caregiver either, since they are experienced and trained not to be bothered by these things. No, I mean that Alzheimer’s disease often brings stress and guilt for the patient’s loved ones.

Certainly, when your family member is distressed, you wonder if you did something wrong. Maybe you didn’t. Maybe you did something they didn’t like, but you had no choice. Maybe you made a mistake, but everybody does. Maybe it’s too late to fix it. We all need to learn to deal with guilt for things we really are guilty of, instead of shoving it aside. But you may not be guilty of anything.

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My grandmother was never in a nursing home. No, I take that back. Into her seventies, she did private duty nursing for elderly people. And before that, she worked in nursing homes. I wonder why she made her children promise never to put her in one? So I took care of her in her own home, where she had lived since the Eisenhower administration.

Still, as a caregiver, I was profoundly influenced by GENTLECARE® system of dementia care, though it was developed for institutional use. Actually, I didn’t even finish reading the book, but it changed my attitude toward my grandmother. I was first a student of my grandmother - that’s the most important part. But the philosophy of “prosthetic life care” guided the study of my grandmother.

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By J. Trevey

If you have a loved one who has recently been diagnosed with Alzheimer’s disease, you may initially be filled with questions about what the diagnosis means for your family. If you have spoken with the doctor and performed your own research about Alzheimer’s disease, you have likely realized that the diagnosis will undoubtedly bring about some changes in the lifestyle of your loved one. Your loved one will need more care and support as time goes on, not to mention the financial implications of medical visits and eventual fulltime care. Though you may be faced with a barrage of emotions at first, it is important to remember that you are in the company of millions of other people in the same situation, as made evident by the plethora of organizations, support groups and associations that exist to help people like you understand and respond to the symptoms of Alzheimer’s disease.

Besides educating yourself about Alzheimer’s disease, it may also be beneficial to begin planning for the future now, while your loved one is the most independent and able to provide input about decisions affecting his or her future. Creating a plan for your loved one’s medical and other care expenses and establishing how decisions will be made on his or her behalf in the future can help ensure that your loved one has access to proper care and prevent you from encountering a gray area that leaves your hands tied in the future.

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