Dragonfly Publications

Blog: Caregiver’s Guide for Getting Through the Holidays

The holidays can be a stressful time for many people. Holidays can be especially stressful for people with Alzheimer’s disease. It can also be a difficult time for their caregivers. Dementia patients have a routine, need a routine to cope with day to day living. Any interruption in that routine can cause major set backs. During the holidays, there will be interruptions. With family and friends coming by, excited children running around, Christmas music playing everywhere, flashing lights, different smells and different faces, these things are bound to cause some anxiety for the person with AD and in turn will cause stress for the caregiver. The first and most important lesson a caregiver needs to learn is to take care of yourself first. I know I have said this before and now you are saying to yourself, yes, right, I hear you but in reality how do I do that when everyone around me needs me? The answer is you have make the time, find the time, treat it like it is just as important as giving your loved one his or her medication. If you don’t make time to take care of yourself, your body will take the time for you, with or with out you having any input in the decision.

On Christmas Day 2007, Rose and I had just finished hosting our family’s Christmas day brunch. Since Mom was unable to host the holiday events any longer, as the oldest sibling I felt it was my duty to take on the tradition and host my family. That morning, I woke up with a splitting headache and despite taking two Advil a couple of times during the day, the headache seemed to get worse as the day went on. I brushed it off, thinking it was probably a result of lack of sleep and the extra hustle and bustle of the holiday season. In the back of my mind though there was a little voice in side of my head telling me that this may be a sign of something more serious.

The last of the relatives left at 7:00 p.m. After a vigorous round of “Where’s my lighter-where’s my purse?”, I took Mom home and got her settled in for the night.

When I got back home, I was helping Rose clean up the kitchen. But my head hurt so much now that my vision was blurred and I felt sick to my stomach. I sat down at the kitchen table and rested my head in my hands and told Rose I wasn’t feeling well. Then I burst into tears.

“What’s wrong?” Rose asked.

My body trembled and my head pounded.“My head…I’ve never had a headache this bad. I think I need to go to the emergency room.”

Rose, knowing that I never complained about much, especially not feeling well, figured that when a nurse says something like that, it’s serious. So without hesitation, she put me in the car and took me to the hospital. When we got to the emergency room, the first thing they did was take my blood pressure—it was 160/100! My normal blood pressure ran about 90/60, so this was abnormally high. Now I was convinced that something serious, a stroke or an aneurysm, was the cause of my elevated blood pressure. I was terrified that something terrible was happening and I was also angry that I had no control over it. Why is this happening now? My mother needs me! My family needs me! Those were the thoughts running through my mind a mile a minute as they wheeled me toward radiology for a CAT scan of my head. When the tests was finished, a radiology tech wheeled me into a curtained cubicle to await the results. As we waited for the results, I went over in my head everything that needed done that was in danger of not getting done: Mom had an appointment with the rheumatologist on Monday and the podiatrist on Thursday. I needed to get a refill on her Aricept and Seroquel before she ran out a the end of the week. Rose’s mom had an appointment with her oncologist on Tuesday. But we needed to get her lab work first so we would know if she would need yet another blood transfusion before she received more chemo. She also needed groceries and bag lunches put together for the week. Because neither Rose or I could leave work to make her lunch during the day. It was also year end and I needed to close out the books for our business and get things in place for the new year. The more I thought about all the things that needed done and the chance that I would be incapacitated and not able to do them, the sicker I felt.

Twenty minutes after my CAT scan, the emergency room doctor stepped inside my cubicle.

“Your CAT scan and lab work are perfectly normal,” the ER doctor assured me after all tests had been completed.

Instead of feeling relief, I looked up, bewildered, my head still throbbing and asked. “So what’s going on? Why is my pressure up and why do I feel so lousy?”

“Have you been under a lot of stress lately?” he asked.

“Nothing I can’t handle,” I answered.

The ER doctor looked at me over the metal chart in his hands. Suddenly a light bulb went off in my head. Maybe I couldn’t handle the stress of caring for everyone as well as I had thought.

Stress takes its toll on our bodies and our minds. Unfortunately, the holidays, which should be fun and exciting, can add extra stress to our already stressful lives. I never realized until that moment how much stress managing Mom’s care, helping Rose take care of her mother, and trying to hold down a full-time job had caused. There was no time to contemplate how I was feeling, I had others that depended on me, seriously ill people who could not care for themselves any longer. So I did what many caregivers do: I put my head down and plowed through the doctor’s appointments, medication changes, explosive diarrhea brought on by those medication changes, urinary tract infections, looking for lost eyeglasses glasses, lost shoes and lost keys for the hundredth time. Dealing with behavior issues and temper tantrums requiring the same skill set as a hostage negotiator as well as middle of the night emergency room visits for fever so high it brings on hallucinations or bronchitis on the brink of turning into pneumonia. Some of these things all happening in the same day.

I surely didn’t think I would be the one to land in the emergency room- but here I am. How was it that I had always been able to manage things like this before, but couldn’t I do it now? This is ridiculous, I thought as I laid on the gurney in my hospital cubicle. I must not be trying hard enough. What a slacker!

The doctor gave me medication to lower my blood pressure and a prescription for Xanax. Within an hour my blood pressure was coming down, the headache felt more like a hang over now, and in spite of the embarrassment I felt coming here for what I now felt like was nothing, I was feeling better. I took the prescription for Xanax home but didn’t get it filled. I was sure I didn’t need drugs in order to cope with my life. I’d figured it out on my own like I always had. I thought having to take medication was a sign of weakness, and I was tougher than that. -Two weeks later, I found myself curled up in the fetal position on an exam table in my doctor’s office experiencing the worst panic attack of my life.

Don’t be stubborn like me. Pay attention to the signs that you need a break:

1. You can’t remember the last time you felt happy.

2. You are exhausted, but can’t sleep.

3. If you do sleep, you dread waking up in the morning.

4. Feel only anger towards your loved one or lose your temper frequently.

5. Experiencing physical symptoms like headache, heart palpitations, shortness of breath, choking sensation or shakiness.

Any of these symptoms may be a sign that you need a break. Depression is a real threat to caregivers. Caregivers are high on the list for developing depression. It’s important to remember that depression is a medical disorder that can be successfully treated. Depression is not a personal weakness, nor a sign that you are unable to care for your loved one. It can be a sign that you are running out of gas and need a break or need to find a different way to do things. Taking care of yourself is the foundation that will give you the strength to care for your loved ones.

During the holiday season, take advantage of others being around. Ask family that are visiting if you can step out for a while to run errands or anything else you want to tell them in order for you to get away for a while. Not only will it give you a chance to take a breather, it will give them direct insight into what you down twenty-four hours a day- seven days a week. This may prompt them to become more actively involved in their loved one’s care or it may scare them off all together. Either way, its worth a try and you will know who you can truly count on and who you can’t. No chance at leaving the house? Find a safe room. I can’t you how many times I have locked myself in the bathroom or have gone into the garage and sat in my car just to get away for a while. Sometimes you gotta do what you’ve gotta do.

The holiday season will be here and gone before we know it. That maybe good news to most caregivers. Try not to let the added stress ruin any chance for joy and the opportunity to make new and pleasant memories with your loved one. Any one who is caring for someone with Alzheimer’s dementia knows how progressive this awful disease is. Next year, things may be a lot different that this year. We are losing our loved ones with every passing day. There is not a holiday or birthday that goes by that I don’t wish I had one more with mom. It’s important to cherish the time we have left with them. Take time away from the crowd for you and your loved one. You may be the only familiar thing for them in the holiday chaos and not the only one who needs a break from the crowd. It will be a comfort to them and may turn into a treasured moment for you as well.

Happy Holidays


Why Patient Advocacy is So Important

I Have to Leave You Now  A Survival Guide for Caregivers of Loved Ones with Alzheimer's Disease by Maria V. CilettiI Have to Leave You Now: A Survival Guide for Caregivers of Loved Ones with Alzheimer’s Disease Maria V. Ciletti

Patient Advocacy- Dealing with Insurance Benefits

Health care is expensive. It can be extremely costly when you are dealing with a long term illness like Alzheimer’s Disease. Patient advocates are responsible for making sure their loved one is receiving all the health care benefits that are available to them. Medical services as well as medications, even with insurance coverage can be very expensive. In order for the advocate to make sure their loved one is receiving all the benefits they are entitled to, the advocate will need to become familiar with the private and public agencies that provide those services.

Dealing with health insurance can be a challenge. The first thing you need to do is make sure your loved one is signed up for the program he/she are eligible for. At age sixty-five, it is mandatory that everyone sign up for Medicare. If you don’t sign up for Medicare at age sixty-five you may incur financial penalties until you do sign up. There is one exception in avoiding the penalty: if you already have credible coverage, which means health care coverage from your employer or your spouse’s employer and those employers have more than twenty employees. Here is a little more information about Medicare:

Medicare: Medicare is a federally run program for people age 65 or people who are disabled. You must sign up for Medicare at age 65 or you might incur a10% penalty for each year you haven’t signed up. There are four parts to Medicare that you will need to familiarize yourself with. They are:

Medicare Part A covers hospital inpatient services, home health, durable medical equipment and hospice visits. Medicare Part A has no premium. If you were employed during your lifetime, you already paid into the Medicare program. Medicare Part A does have a $1,216 deductible each year. ($1,260 in 2015)Days 1-60: $0 coinsurance for each benefit period ($0 in 2015)Days 61-90: $304 coinsurance per day of each benefit period ($315 in 2015)Days 91 and beyond: $608 coinsurance per each “lifetime reserve day” after day 90 for each benefit period (up to 60 days over your lifetime) ($630 in 2015)

Medicare Part B has a premium of $104.90 per month. It covers doctor visits and other outpatient services. There is a $147.00 annual deductible to be met as well as a 20% copay after the deductible has been met. You can purchase Medigap insurance to cover both the deductible and copay. Please be advised that if you wish to purchase Medigap insurance it must be done when you sign up for Medicare at age 65. After that time you will be unable to sign up for Medigap and my need to choose a Medicare Part C plan instead is you want deductible and copay to be covered.

Medicare Part C-(Managed Care Medicare) Takes the place of your regular Medicare benefits. Part C covers everything Medicare Part’s A, B & D cover. This is your one stop policy. This coverage is provided by a commercial insurance company ( Anthem BCBS, Humana, Aetna, United Health Care, Cigna, and several other commercial insurers.) Coverage for managed care Medicare policies allow the patient to have a low flat rate copay for doctor visits and another tiered copay for specialists as well as prescription drug coverage. But, just like any other private insurance, Managed Care Medicare policy holders are also limited to which providers they can see for treatment. The one thing to make sure of is that if you pick a managed care Medicare policy for your coverage is that your current doctors and hospitals are in network with the plan. Even though some managed care Medicare policies have out- of- network benefits, many don’t. So if you see a doctor that is not in the network, you may be responsible for the entire bill with out any discounts as if you saw an in network provider. Each year members get a chance to change their Part C policy. Open enrollment for Managed Care Medicare plans is October 15- December 7th. This is a good time to re-evaluate your current plan and shop around for one that may be more suitable to your needs.

Medicare Part D is prescription drug coverage. The monthly premium for Medicare Part D is calculated from 2 years of income reported on your tax return. If you made $85,000 or less and are single or made $170,000.00 or less jointly, all you would pay for coverage would be your Part- D premium. If your annual income was higher than $85,000.00 for single/ $170,000.00 jointly, you will pay a higher premium.

Medicare is the main insurance most people over sixty-five will be dealing with. Others may include:

Public Employee Retirement Systems (PERS) takes the place of Medicare. It provides health insurance, retirement, disability and survivorship benefits to employees who have worked for the state, county, town or city. Most of theses plans are underwritten by commercial insurance companies and will require you to see health care providers with in their networks.

Medicaid is a government funded health care program for individuals as well as families of lower income who cannot afford health insurance. Medicaid can be used alone as primary insurance if you are under sixty-five and financially qualify or with Medicare as a secondary insurance to pay Medicare’s deductible and twenty percent co-insurance. Medicaid will be important when your loved one is admitted to a nursing home or other LTC facility. With the Affordable Care Act in full swing, many states have expanded their Medicaid programs, opening the doors for many more people can qualify for Medicaid coverage through the Market Place on the health care exchange at https://www.healthcare.gov/ Open enrollment ends 12/15/2014 in order to get coverage starting January 1, 2015

Private Health Insurance is insurance you buy on your own if you are under age sixty-five. There is no government link to this insurance except if you would purchase it on the government health care exchange where you may qualify for a tax subsidy based on your income. Private Health Care Insurance companies administer the benefits and set their own guidelines on premium and claim payments. When looking for a private insurance, its best to research the policy to make sure that your physicians are in the network. Some private policies have low premiums but limit the health care providers that you can see. Always consult the provider directory before signing on with an insurance company.

Tricare ( formally CHAMPUS) / CHAMP VA: While the two programs bear similarities, such as being government-backed and serving those who have served, they are in fact quite distinct from each other. Tricare is insurance for active duty and retired members of the armed forces and is managed by the state department. CHAMPVA is a health coverage program for eligible veterans’ families ran by the VA Health Administration Center.

It is not only important to make sure your loved one has the coverage they are entitled to, but that you understand the benefits and how they work. With the ACA in full swing as of January 2014 there are many benefits that are low or no cost to the patient. Many of these benefits are preventative services including annual wellness visits and wellness procedures like mammograms, annual well woman exams, and pneumonia and flu vaccines. Alzheimer’s disease not only takes a toll on the patient’s brain, it takes its toll on the patient’s body too. That’s why it’s important to keep up on preventable diseases like the flu and pneumonia and more serious conditions that can be better treated when detected early.
Here are five links that will help explain the benefits that are available:


If you have questions regarding health insurance, feel free to contact me at http://www.mariaciletti.com and I will be happy to answer your questions.

Dragonfly Publications
Care Tips for Dementia Caregivers

Here is a true-life example of why patient advocacy is important:
One afternoon, my mother, who at the time, because of her advanced Alzheimer’s dementia, was living in a nursing home, suddenly started vomiting large amounts of blood. The nursing home appropriately called a squad and sent her to the nearest hospital. Unfortunately the hospital they sent her to was not the same hospital where she was usually treated.
I was at work, so when the nursing home called me to let me know what happened, it took me about thirty minutes to wrap things up at work and to get to the hospital. When I got to the ER, the receptionist told me mom had arrived and was in treatment bay 1. I walked over to bay 1, a curtained area across from the nurse’s station and inside I heard someone say in a not-so-pleasant voice, “C’mon Grandma- hold still while I get this gown off of you.” Then I heard- “Oh no we are not gonna fight about this Grandma- you are gonna do what I say and we will get along just fine.” I immediately pulled back the curtain and found my mother half dressed in a blood soaked gown, crying and a nurse’ s aide struggling with her to get her out of it. The aide jumped back and seemed stunned by my abrupt entrance.
“What was going on? I asked.
“Grandma here won’t let me help her out of these messy clothes.”
“She is not your grandma,” I said (This woman calling my mother grandma seemed derogatory to me). “She’s my mother and she has dementia,” I said. I walked over to mom who was trembling. “Talking to her that way is scaring her.”
“What way? The aide said, her voice indignant. “I didn’t do anything wrong,” she said. “She just won’t do what I tell her to do.”
I couldn’t believe what I was hearing! How could this person be working in an emergency room? You can’t tell me this is the first person with dementia she has ever encountered. I took a deep breath.
“She doesn’t understand what you want her to do. You have to talk to her-slowly- softly and gently,” I said.
The aide looked at me as if I were from another planet. “Well then if you think you can do a better job- I will leave this up to you,” she said and then walked away.
I felt my face heat up with fury. My plans were to report this incompetent aide- and I would do that soon- but right now Mom needed taken care of and right now I was the only one she could count on. I got Mom calmed down, undressed and into a clean gown. Shortly after that a lab tech came in and drew several vials of blood. An hour later, mom was wheeled down to radiology for a CAT scan of her abdomen. After about a two hour wait in the ER, Mom’s lab work came back showing that she was severely anemic and in need of a blood transfusion. They still did not know where she was bleeding from because the CAT scan results were negative. Mom would need admitted to have the transfusion overnight and a GI consult was ordered to find out the source of the bleeding. Six hours went by until finally a bed became available on a general medical floor. It was after midnight by the time I got mom in her room and settled. A medical resident came in and performed a history and physical on her. He said that someone would be in to draw more lab work so they could type and cross match Mom’s blood, so they could order the blood she needed from the blood bank and then they would start the transfusion. He estimated by how low her blood count was (Normal blood count is 14 gm- Mom’s was 5 gm!) she would probably need two units of blood. I asked him when the GI doctor would be in to see her. He said probably not until the morning when he makes his rounds. This took me back a bit. Obviously mom was bleeding from somewhere- enough for her to require two units of blood. Granted she hadn’t vomited blood in the last few hours, but wasn’t it important to find out what was going on? Mom was getting weaker as the hours ticked by. At one o’clock the type and cross match bloodwork was drawn. Hopefully this would get things started.
Three o’clock- no blood transfusion. Four o’clock- no blood transfusion. Finally I went out to the nurse’s station to see what the hold- up was. The ward clerk looked up the lab results and told me they were still “pending.” As soon as the results were back someone would be in to start her transfusion. At six o’clock-the sun came up but still no blood. I went back out to the nurse’s stations where a fresh shift of nurses had just arrived. I told one of them that Mom was in room 1123 and was supposed to get a blood transfusion last night, but still had not and could she look into it. She assured me she would as soon as she got report. I never saw her again.
Mom slept off and on through the night, but now seemed more restless and was having difficulty breathing. I felt for her pulse- it was 130 and thready (weak). She was receiving two liters of oxygen through a nasal cannula, but that wasn’t doing much good as she was totally mouth breathing now. Around nine-o’clock mom’s IVAC beeped because the IV had gone dry. I let it beep hoping that someone would eventually come in and take care of it. Finally a nurse came in and hung a new bag of IV fluids and checked mom’s vitals. Her BP was 60/40.
“Does her blood pressure always run this low?” the nurse asked.
“No-her blood count is low and she was supposed to get a blood transfusion last night. Is the blood ready yet? The nurse flipped through her notes. “Looks like we are still waiting on the type and cross match,” she said.
“They drew that at one o’clock last night- how long does it take to run a goddamn lab test?” I snapped.
The nurse took a step back.
“Look, I’m sorry. I’ve been here all night. No one has so much as brought my mother a glass of water. Can you find out what is going on? She’s bleeding from somewhere and the ER doc ordered a GI consult. Can you find out when the GI doc will be here?”
“I’ll call down to the lab and find out about the blood. I don’t know when the GI doc will be in-sometime this morning I would imagine,” she said and left the room.
I dozed off in the chair next to mom’s bed but then suddenly woke to a severe pain in my neck and the nauseating smell of hospital food. I looked over at Mom. She was sleeping. Noisily breathing with her mouth wide open. I looked over at the IVAC pole-still no blood. I looked at my watch- it was noon. I had had enough.
I marched out to the nurse’s station and asked to speak to the nursing supervisor. I was told she was in a meeting.
“Ok then I want to speak to the medical director,” I said.
“Is there a problem?” the ward clerk asked.
“My mother is in room 1123. She has been in this hospital for nearly twenty-four hours. She is severely anemic-bleeding from somewhere that no one seems to care about. Her pulse is weak. Her blood pressure is low. She was supposed to have a blood transfusion last night- that never happened.”
“Ok-ok, I’ll get her nurse,” the ward clerk said.
Mom’s nurse-another nurse I had never seen before but who was now deemed “Mom’s nurse” appeared at the nurse’s station. I went through my spiel again. She said she would check on everything and let me know. I snapped- that answer might have worked last night but it wasn’t working now.
“Look–I want my mother transferred out of here,” I said. “You people obviously do not know what you are doing. And because my mother is elderly and demented you don’t think she deserves your time. I want her out of here- I want her transferred to her regular hospital and I want her out of here now.”
The nurse and the ward clerk looked at me as if I were about to take them hostage. I knew by the looks on their faces that they now saw me as a problem- an irrational, possibly dangerous, over protected family member-the hospital staffs worse nightmare! But my behavior got results. Although it took them another two hours to process the paperwork, Mom was transferred safely to her regular hospital.
The actual transfer took thirty minutes. Once at mom’s regular hospital, she was taken to the GI lab for a STAT endoscopy. There the GI doc found two huge bleeding ulcers in her stomach that he was able to cauterize. He then admitted her to a medical floor where UPON ARRIVAL to the floor she received two units of blood. After the blood transfusion, her vital signs improved. She even woke up a bit and was more alert-something we hadn’t seen in quite some time. In two days she was discharged back to the nursing home. Thankfully Mom had a good outcome. Had I not insisted that she be transferred from the previous hospital, I knew she would no longer be with us.
This is why patient advocacy is so important. Not only for our loved ones with dementia, but anyone who is ill. Whether you are taking a family member to the emergency room or you are going there for treatment yourself ALWAYS have someone there with you. Everyone needs an advocate who can speak up for them. Not all hospitals are like the first hospital Mom was admitted to. The majority of hospitals employ competent, caring staff. During Mom’s illness she received wonderful care form most of the facilities she was treated in. But there will always be one event that you need to be on the look- out for. If you see something that doesn’t seem right- speak up. This is the time to ask questions and ask for clarifications. Do not feel intimidated. Do not feel you are bothering the staff. It is your right and your loved ones right to know what is going on. Dealing with health care professionals should be comforting- not confusing. When your loved one is being treated you should feel confident that they are being treated right. If you don’t speak up, the consequences can be devastating.

A good advocate needs to be assertive and have good communication skills. This is especially important when dealing with new health care providers that do not know your loved one or their history. Every medical event requires you as advocate to pay close attention to new symptoms as well as new treatment and medications ordered. Granted medical staff are human and humans make mistakes- trust me- I have seen it happen. There will be times when things just don’t seem right. This is when you will need to speak up. If you are not getting the answers you need- leave. Take your loved one to another facility for treatment. It is better to be safe than sorry later. If you don’t act- it could mean your loved ones life.