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Caregiving in Early Stage Alzheimer’s Disease

by

Maria V. Ciletti

Your loved one has just received a dementia diagnosis. The shock hasn’t quite worn off yet but reality is slowly starting to sink in. Doctor appointments, medical tests, prescriptions for medications you’ve seen advertised on TV, as well as the uncertainty of what the future holds, swirl around you in a whirlwind of confusion and anxiety. Your world has been turned upside down and you don’t know what to do first. These are common feelings for anyone being thrust into the tumultuous world of Alzheimer’s disease. The first thing to do is take a breath. Actually, take a couple of slow deep breaths. It will help calm your mind and body. Okay. Now that you are a bit calmer, let’s take a look at what lies ahead.

As you know, Alzheimer’s disease is a progressive terminal illness. There is no cure for Alzheimer’s disease. The only treatment available for the disease is treatment of the symptoms. Some people, if started early enough get good benefits from medications like Aricept and Namenda. The reason for starting these medications early on is because the medications’ actions are supposed to slow down the progression of the disease. They won’t improve your loved one’s functioning, but supposedly they will keep them functioning at the same level for a while longer than if they didn’t take the medication. My mother took those medications for 24 months and got good results from them. After the 24 months, they seemed to lose their effectiveness on her and her condition quickly deteriorated. Some people do better for longer periods of time on these medications and some people don’t get any benefit from them at all. Like everything else with Alzheimer’s disease, what works for one person might not work for another. Personally, I think the medications are worth a try. Even if they require multiple dose adjustments, I think it’s well worth the effort to help our loved one’s feel better.

The main goal in caring for anyone with a terminal illness like Alzheimer’s disease, is to obtain the best quality of life possible for the stage they are in. To do this we must keep in mind what behaviors are effected in each stage of the disease. So what behaviors should you be looking for in the early stages? Someone newly diagnosed with AD may still be able to function pretty well in their daily lives. Hallmark symptoms of early stage AD are: Memory loss, especially not being able to remember information recently learned. Trouble with vocabulary- difficulty understanding words as well as finding the right words for common things. Difficulty doing daily tasks like following a recipe, writing out checks to pay bills as well as having difficulty finding their way home from familiar places. Many early stage AD patients require only support and direction- for a while at least. The one sure thing about Alzheimer’s disease-the symptoms are constantly changing and no two people will experience it the same way.

So what can you do to prepare for a fight with an opponent that keeps changing the rules of the game?

1. Educate Yourself about the Disease

The more you learn about your loved one’s disease and how it will progress over the years, the better you’ll be able to prepare for the future. In the early stages of Alzheimer’s, for example, your loved one will still be pretty independent. Encouraging your loved one’s independence and self-care, will be a your main objective. But it is important to keep in mind that even though they are still able to function pretty well, cognitive changes are still taking place. Just because your loved one is functioning well today doesn’t mean he will be able to maintain this level of functioning next month or next week. Don’t be lulled into a false sense of security. Eventually your loved one ‘s cognitive and physical regression will mean he or she will ultimately require 24-hour care. Though it may be hard to think about such a bleak outlook, the sooner you put plans for care in place, the more your loved one can be involved in the decision-making process.

 

2. Plan for the future

Long term care options should be looked into in early stage. Visit long-term care facilities in your area before you need them. That way you can take your time and research the facilities in your area. Most care facilities welcome visits and can be very helpful with obtaining benefits you loved one may be entitled to down the road. Also contact your Area’s Agency on Aging for other resources that may be available in your community. Having something in place before you actually need it will be a blessing when the time comes.

Paying for long-term care can be a major source of stress as well, so it’s important to research all your options as early as possible. Estate planning, as well as other legal and financial issues should be addressed early on. If your loved one is applying for Medicaid benefits, there is a six-year look back period where the state will take any assets your loved one has available, including their home. Consult with your accountant or family attorney as well as other family members to make legal and financial arrangements and determine the long-term care options that are best suited to you and your loved one. This is also a good time to make sure documents like Living Wills and Medical Powers-of-Attorney as well as a Durable Power of Attorney are in place. There is a link below to a website that can help you with Medical POA’s and Living Wills in your state. Although in some states you can draft your own durable POA’s, I advise you to seek help from an attorney. Getting these documents in place early, when your loved one can participate in developing them will give you peace of mind when the time comes that you will need to use them.

3. Accept the Things You Can Not Change

During my mother’s illness, I recited the Serenity Prayer A LOT! You can’t stop what is happening to your loved one, but you can make the journey one that is loving and memorable. Learn to let go of what you have no control over. In early stage, your loved one will be the most capable of functioning and enjoying life. Take advantage of that time. Share the things that are important to you and your loved one. Take short trips. Take pictures of your fun times and create a memory book to share later on. Having a sense of humor helps. You will find yourself in situations you never thought your would be in. Having a sense of humor about it will help get your though many of them. Sometimes just stepping back and looking at the situation differently can be very enlightening.

4. Join a Support Group

The average life expectancy of someone diagnosed with Alzheimer’s disease is 6-10 years. That is a long time. Care giving can consume your entire life if you let it. If you take one thing away from this Blog it’s that you can’t do this alone. Reach out to one of the many support groups in your community or on-line. The Alzheimer’s Association http://www.alz.org can help you find support groups in your area. Knowing that you are not the only one dealing with this disease can be enough to get you through the toughest of times. On line support groups like Memory People ™ http://www.facebook.com/pages/Memory-People/126017237474382 or Alzheimer’s and Dementia Caregivers Support Group on Facebook:http://www.facebook.com/groups/26340131512/ can be extremely helpful as they have people in these groups experiencing the disease in all different stages.

 

Being thrust into the role of caregiver doesn’t come with an instruction manual, but there are books and website resources that can teach you the skills you need. The following are some I have found helpful. If you have any questions or comments, I would love to hear them. Send me an email at mariaciletti@mariaciletti.com or visit my website: http://www.mariaciletti.com

Caregiver Resources

Alzheimer’s Association

National Office

225 N. Michigan Ave,. FL. 17

Chicago, IL 60601

Email: info@alz.org

Phone: 1.800.272.3900

Website: http://www.alz.org

 

The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer’s Disease, Related Dementias, and Memory Loss.

by Nancy L. Mace and Peter V. Rabins 

http://www.amazon.com/36-Hour-Day-Alzheimer-Disease-Dementias/dp/1455521159/ref=sr_1_1?s=books&ie=UTF8&qid=1430913730&sr=1-1&keywords=the+36+hour+day

TheAlzheimerssite.com: http://blog.thealzheimerssite.com/its-key-to-have-proper-alzheimers-diagnosis/?utm_source=social&utm_medium=alzaware&utm_campaign=its-key-to-have-proper-alzheimers-diagnosis&utm_term=20150423

I Have to Leave You Now: A Survival Guide for Caregivers of Loved Ones with Alzheimer’s Disease.

By Maria V. Ciletti

http://www.amazon.com/s/ref=nb_sb_noss_2?url=search-alias%3Dstripbooks&field-keywords=I%20Have%20to%20Leave%20You%20Now

Click on the link https://www.createspace.com/4881872 to order your copy. When you get to the Amazon CreateSpace E-store add I Have to Leave You Now to your cart. Below the cart under Options and Discounts enter the special caregiving blog discount code: 9XU5XDJD in the box and click enter discount to receive $5.00 off the retail price of $16.95

Living Will and Medical Power of Attorney: http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289

While I Still Can

By Rick Phelps

http://www.amazon.com/While-Still-Can/dp/1469188473/ref=sr_1_9?s=books&ie=UTF8&qid=1430913730&sr=1-9&keywords=the+36+hour+day

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