Archives for posts with tag: books on caregiving

Blog: Dealing with Change

 

“I’m not so sure where I have been

I don’t know just where I’m going

Hard as I hold it in my hand

I can’t stop the wind from blowing …”

Melissa Etheridge: “Change“.

“Change”, by Melissa Etheridge is one of my favorite songs. The refrain of the song, “the only thing that stays the same-is change” rings true in all aspects of life.  It’s easy, almost magical to watch a baby grow into a toddler, then a child moving into their teens followed by young adulthood. As parents we know we have done our job if our kids make it to adult hood with very few scars. As time goes on, other changes take place.  One of the most difficult changes to witness is watching someone you love become ill and sometimes changing into someone we don’t recognize. It doesn’t seem fair and sometimes it doesn’t seem real.

Wouldn’t it be nice if things remained the same? If our loved ones didn’t age into oblivion but instead stayed healthy and happy once they reached their age of maturity.  When I was a kid, I think I thought this was how the world worked. But unfortunately, it doesn’t.  The only thing you can count on is that every once in a while you will get thrown a curve ball and life as you know it will never be the same.

So how do you deal with change?  Mental health professionals advise living in “the moment.” That seems like good advice, but what if you “moment ” is a living hell? What if you are caring for an aging parent or sick child?  What if you are battling your own health issues?  Where do you get the strength to deal with the fear, anger, sadness and frustration that normally result from these situations? The answer is actually inside of you and here is how to find it.  First, take a deep breath.  Try to look at the situation  as someone on the outside looking in. What would other’s think or feel if they were in your shoes? Would you expect them to be scared? Angry? Depressed? Those all seem to be normal reactions to the type of change they are experiencing, right? So why do we beat ourselves up when we feeling this way? Is it because we feel inadequate? Do we feel weak?  Those are normal feelings too, especially if you are not accustom to taking care of someone or if you have been doing it for a long time and are simply running out of gas. If you are feeling these things, it is okay to feel them. However, it is not ok to dwell in those feelings for too long.  The key to dealing with all this is to feel the feelings then move on.

Change makes us feel out of control.  So many of us have been taught to always be in control. For many of us, it has become our security blanket, but in some cases it does more harm than good. We need to let go the notion that we have control, because realistically, we don’t have control over very much that happens in our lives. Fighting change leads to frustration.  Frustration can lead to anger. Anger turned inward can lead to depression. Once we learn that we don’t have to control what is happening to us, believe it or not, things will begin to  feel better.  If we look at change as an opportunity instead as another road block thrown in our path, some interesting things may start to happen.

In Melody Beattie’s book, The Language of Letting Go, Melody states ” Controlling is self-defeating. It doesn’t work. By over extending ourselves to make something happen, we may actually be stopping it from happening. Force yourself to let it go. Put as much energy into letting go as you have into trying  to control the situation. ”

There will be many times in our lives when we don’t understand why things are changing.  But the best way to deal with this is to trust that whatever is happening is meant to be and that it is a process that will make us stronger and take us to something good.  Let’s face it, we have all gone through changes in our lives;  major changes and we have survived. We may be a little older, a little more tired and a bit weary, but we can still get through even the toughest times if we continue to believe in the process and believe in ourselves.

Having a difficult time dealing with change or have you found a new way of dealing with it?  I’d love to hear about it.  Email me at mariaciletti@mariaciletti.com.

The Language of Letting Go by Melody Beattie: http://www.amazon.com/Language-Letting-Meditations-Codependents-Meditation/dp/0894866370/ref=sr_1_1?ie=UTF8&qid=1437653437&sr=8-1&keywords=melody+beattie+the+language+of+letting+go

I Have to Leave You Now: http://www.amazon.com/Have-Leave-You-Now-Caregivers-ebook/dp/B00OJJIAKA/ref=sr_1_1?s=books&ie=UTF8&qid=1437654611&sr=1-1&keywords=i+have+to+leave+you+now

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Writing is not life, but I think that sometimes it can be a way back to life.”

-Stephen King, On Writing: A Memoir of the Craft.

In June of 1999, Stephen King was walking near his home in North Lovell, Maine and was struck by a minivan. His injuries were serious and his recovery was long and difficult. He credits writing as the thing that helped him get through that difficult time. You don’t have to be a New York Time’s Best Selling author to write. All you need is a pen and paper or lap top or IPad, or whatever you choose as your instrument and a private place to gather your thoughts and write. Sometimes it doesn’t have to be a private place. I have written in the back seat of the car on vacation, on a crowded flight to Italy and in a Hospice while taking care of my mother-in-law.

Writing is something you do for you. No one has to see it unless you want them to. Writing is a safe way to purge your frustrations and can help you get some insight about your feelings. I have kept a journal of my writing for many years. I like keeping a journal because it gives me a place to look back on when I am going through a rough patch. I can look back in my journal and see how I was feeling in the past and what I did at the time to feel better or to resolve the situation.

During my mother’s illness, I didn’t know how to cope with the feelings of resentment and anger that were bottled up inside of me. Even though these feelings are common when you are a caregiver, especially if you have been a caregiver for a long time, I didn’t feel comfortable talking to family or friends about how I felt because I was embarrassed and felt ashamed. I turned to journaling and found a way to safely and effectively get those feelings out and work through them.

Studies have shown that writing your feelings down can be just as effective as talking it out and it’s a way to vent your feelings privately without hurting anyone. Being able to see on paper the cause and effect of what is going on in your life increases your ability to successfully deal with those issues.

The writing will come slow at first, like the trickle of a faucet, but then it will come faster and soon it will be like that faucet has been open full blast. It’s most effective when you can write like no one is going to see it because that is when the deepest darkest feelings come through. It’s very cathartic. You can keep your writing in a private journal or tear it up when you are finished. Some people find that writing out their thoughts and then setting them on fire ( safely of course) is a way of releasing their pain.

Writing as therapy is available 24 hours a day, you don’t need an appointment and there is no copay. Writing is another tool in our tool box for dealing with what life throws our way. Writing can be a way of finding ourselves and finding our way back to a happy life.

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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