You are currently browsing the Come Back Early Today blog archives for February, 2012.
No one wants to live or place a loved one in a long-term care facility, but sometimes it’s the most loving choice. This is especially true for Alzheimer’s patients in the mid- to late-stages of the disease. They need so much more care than any one person can provide at home, even with people coming in to help.
For more on this topic see my recent Huffington Post article.
Today I’d like to reprint a comment I recently posted on the Alzheimer’s Reading Room in response to a question posed by the site’s founder and director, Bob DeMarco. The question was “How Has Alzheimer’s Impacted You?” Here’s how I answered:
Unfortunately my Azlheimer’s caregiving days are over. But now I can sit back and reflect on the seven years I spent caring for Ed. I learned so much from that experience. I learned patience, I learned to deal with all of the difficult situations that typically arise when caring for a loved one with dementia. I learned new ways to communicate and connect. But mostly I learned a new way to love. And I learned that Ed loved me during that time more than ever during our 30-year relationship. I learned to let go, and I learned how to grieve when he passed away. Finally, I learned that life goes on. Our loved ones live on in our hearts forever as we pick ourselves up and return to the non-Alzheimer’s world.
That’s what I learned.
Clear Signs that the Patient Should Stop Driving: The Alzheimer’s Association (alz.org) lists five primary ones:
Tips for Getting the Person to Stop Driving:
Getting your loved one with Alzheimer’s to stop driving will not be a simple task, but remember – it’s your responsibility to get him or her out from behind the wheel before someone gets hurt.
I have mentioned many resources for caregivers on this blog, including AARP’s sections on caregiving and The Alzheimers Reading Room, just to mention two. I recently discovered a new website dedicated exclusively to supporting caregivers. Although not limited exclusively to Alzheiemer’s caregiving, Caregiver.com has many articles and tips about caring for people with Alzheimer’s. It also publishes a helpful magazine, “Today’s Caregiver.” Check it out.
Alzheimer’s disease is often accompanied by serious problems such as psychosis, delusions, mania, extreme irritability and aggressiveness, just to name a few. The first step in dealing with these is to get a thorough medical evaluation to be sure that other health issues are not causing or contributing to the problem. The next course of action is usually trying non-pharmacological approaches to the problem.
But if those approaches don’t work, you may want to consult your loved one’s physician about trying an antipsychotic medication. Despite their potential effectiveness, though, these drugs can have very serious side effects. Especially an increased risk of mortality in older adults with dementia.
But the Alzheimer’s Association states that their use may be appropriate for individuals with severe symptoms or who have the potential to harm themselves or others. The Association also says that in some cases the risks of the symptoms may be worse than those of the medication.
If used, antipsychotics should be prescribed in the lowest dose possible for the shortest period of time. This is the key advice that can prevent the horrors that are experienced by some Alzheimer’s patients taking antipsychotics.
When Ed was put on both an antidepressant and an antipsychotic he changed from being depressed, agitated, and having hallucinations and delusions to being one of the most contented, calm and lovable people you’d ever want to meet.
For patients with the most severe symptoms it basically comes down to this: Would you rather have your loved one continue living with agitation, psychosis, mania or other extreme conditions or would you rather try to afford your loved one a better quality of life despite the risk that their life may be shortened?
A daunting decision.
I will be publishing a more detailed post on this topic on the Huffington Post in the near future. You can go there to check it out.
January 13th was the fifth anniversary of Ed’s death, and I’m sorry to have to report that I did not remember the passing of this great man. It’s true I broke my foot in December and was still hobbling around in one of those big black boots, but never did I think I’d forget his passing. But as they say, “Life Goes on,” and I guess this is proof.
To mark the anniversary belatedly I’d like to quote from the book review I received from Reader’s Favorite: “Above all, Come Back Early Today is a tribute to a remarkable and unforgettable man, who still knew and expressed joy even on the last day of his life.” That sentence always brings tears to my eyes, and especially so today.
Rest in peace, Ed, and know I will never forget you, even if I did forget your anniversary.
There is a helpful tip that can help you reduce your emotional distress when your loved one becomes distressed over some event. You just have to be aware that people with dementia live only in the present.
This means that people with Alzheimer’s have several traits:
People with Alzheimer’s disease usually don’t stew about bad things that happen to them. They don’t fret over things that happen simply because they don’t remember them.
Yet caregivers who experience their loved one’s distress over some issue tend to become quite upset. They suffer long after the person with Alzheimer’s has completely forgotten the issue and moved on.
In addition, people with dementia often adjust to change more easily than their loved ones do because they don’t remember how things were before the change. Thus, they are not aware any change has taken place.
Finally, people with dementia typically don’t worry about tomorrow. They don’t experience the kind of anxiety about the future that we may because they don’t have the mental capacity to do so.
So one secret to reducing your emotional stress is to remain aware that your loved one lives only in the present. That way you can be more at peace when your loved one gets upset about something. You will be able to end your own suffering as quickly as your loved one does and then you can move on to something pleasant.
Alzheimer’s is a deadly serious topic, but sometimes laughter is the best medicine. So I’ll make a “Silly Saturdays” post weekly with some amusing story about Ed, giving us a chance to smile in the midst of our somber life situation. Please send me your own “silly” stories and I’ll post them, too.
Ed had always had a horrible lack of appetite and was seriously underweight all his life. At 5′ 8″ the most he ever weighed was around 120. When he entered the Alois Center he was down to 111. The Alois aides were constantly trying everything they could think of to get him to eat more. When an aide once told him I was concerned he wasn’t eating enough he said, “Eef Ma-r-r-rie’s worried that I’m not eating enough you have her come here and tell me that herself!”
Another time when an aide was urging him to eat, he finally smiled impishly and, obviously aware he was being humorous, said, “I’ll eat it if you eat it!” They both laughed and I had a good laugh, too, when the aide told me about it.
I would like to share with you that I have been approved as a regular blogger on the Huffington Post, where I will post articles on Alzheimer’s caregiving.
To see my first article go to http://www.huffingtonpost.com/marie-marley/alzheimers_b_1244155.html.
I would welcome any of you to go to the article and post a comment and/or click on the icon to become a friend.
Thanks for your support. I appreciate it.