My Caregiver Handbook

By Fran Lewis Last updated Jan 2, 2022

Caregiver Handbook

Caring For Family Members and Patients That Need Us.

This is an original pamphlet and guide for caregivers, volunteers and nurses, and aides to use as a resource when working with patients with Alzheimer’s, dementia, or any illness that involves memory loss.

The author is not a doctor nor is she dispensing any medical advice. This guide has been created to help anyone who is a caregiver or is thinking of volunteering in a medical or hospital facility.

Caregivers: What You Need To Know
In August of 2003, my family’s life drastically changed. On August 25 of that year, my mom got sick. She woke up with a sharp pain in her back and could hardly breathe. She called my Aunt and told her to come down to her apartment and not to call my sister or me. She wanted to handle this without worrying either one of us. However, this was not to be.

My Aunt called 911 and they responded to the call but insisted that one of her children be present when they did initial exam and assessment. I was and still am the only one who knows what meds my mom takes and how often and the dosage.

After dealing with the preliminary issues and arriving at the hospital, the staff immediately addressed my mother’s issues and concerns. They did numerous tests to find out what had caused her problem. From what she was saying, it sounded like she did not remember taking her blood thinner medicine and had overdosed on it by accident. She had always been very careful with her Coumadin. However, she had been forgetting to take it and was forgetting a lot more too. Frightening this might seem it only got worse.

From this hospital, she was taken by ambulance to another one where they thought they could address what they believed was an aortic aneurysm. However, this was incorrect.

The following morning I received a call from the heart surgeon in charge of my mom’s case asking permission to operate before it was too late. Of course, I did not hesitate and allowed him to save her life. Fortunately, I got there just in time to see her before surgery. This was the last time she would sound lucid or clear for a very long time. She came out of the operation with many more problems. She had died twice on the table and had to be revived. (I was told this later on) She began to slur her words and not understand what was happening around her. The physical operation was a success but her mental capacity for dealing with things and understanding what was happening around her were greatly diminished.

When she finally came home from the hospital 2 weeks later she had to re-enter the next day due to complications that no one realized when she was discharged. Because of four, more stays in the hospital my family and I noticed that her ability to process information and deal with daily situations had been compromised by the surgery and the anesthesia that was given. She even realized that she could not remain alone for any long period.

Due to all of the stays in the hospital and many other factors that changed her ability to care for herself, we were forced to find help for her by enlisting VNS to find us, aides, to care for her the right way. Unfortunately, this turned out to be costly to my family and me. I had to change my lifestyle and my way of living which no one seems to care about. I had to retire from teaching early and find other interests that I could pursue at home. One of course, is writing books and the other short stories. I have even tried to publicize the fact that I am writing a book about Alzheimer’s as a resource for other families to be able to learn more about this illness and to get the help and care they need for a loved one.

The only problem is that no one realizes that as the person who has to deal with nurses, doctors, home care agencies and home care providers that you still need to take time for yourself and have some kind of life. I have been nowhere for the last 7 years since my mom was diagnosed with this awful illness. She is getting much worse and now rather than make her presence known she just sits and stares all day while sitting on her chair in front of her television.

Although the aides do try and sometimes succeed in taking her out in her wheelchair to get some air and possibly run into an old friend who might stop and say hello, she often rebels and refuses to leave her chair. It seems like it is her safety net and she is afraid of anything that is different or changes in general.

It is really hard to remain calm and neutral when it comes to other family members that go away on vacation and do not check and see how my mom is or if there is something that I might have planned or need to do. They usually plan their flights, or trips and tell me about them when they have their trips finalized. This gets me quite upset and I often get into it with the other person. I try to explain that there are times that I would like to just do something during the day or even stay over in a hotel with my husband for the night. The home health aides are not allowed to give my mom her meds. I have to give them to her twice a day. I can put them together once in a while in the morning but the pill she takes to stay calm should not be given in a double dose in the morning. She will be too calm and possibly sleep throughout the day making it hard for the day aide to feed her.

People forget that caregivers might actually do other things during the day. So, when I state that I am busy writing an article for a magazine, or just for one of my books, or to post on one of the many sites that I belong to, people often say, “What are you busy with, you don’t work.” I work from home and probably get more done in a day then they do working in an office. I never put anyone down and I respect whatever other’s do. I worked for over 36 years in the NYC Public Schools and I miss working with the students in reading and writing every day. I had fun teaching my writing classes and working with students in reading and teaching the classics was not only fun but also, rewarding.

Caregivers are people too and not just people who provide time and care for a person that is ill. They need to understand that the caregiver needs time to regroup and regenerate him or herself and take time to feel

Caregivers: Are Special People: Tips to Help You Survive
As the primary and only caregiver for my mom whom has Alzheimer’s I have had to develop different ways to keep myself active and my mind stimulated. All too often as a caregiver, you become so immersed in taking care of the needs of the person who is ill that we forget about our own. When you make the decision to care for the family member at home you are really taking on a challenge of Herculean proportion. Every day is different and every challenge unique and must be handled differently but with kindness and care.

When a person has Alzheimer’s the hardest thing to deal with his their forever changing erratic behaviors. They can be calm one minute and out of control or violent the next. These behaviors tend to put a lot of stress and strain on the caregiver. Here are some ways that I found work with my mom and might help others deal with these behaviors:

Discussions and Talking: Tips

I find that speaking slowly and softly in a calm voice does help to calm the person down.
Speaking in simple sentences and short phrases does help
Repeating something in different ways sometimes helps her to understand what she needs to do: It is a simple as saying Open, or Open your mouth instead of eat this or trying to explain to her that she needs to eat.
I always call her by her first name or of course Mom to get her attention: at this point, she still knows who she is when you call her. She does not always say her name or respond verbally when asked who she is.
Always be positive and smile at the person. Do not let them think that you are angry with them. They are not at fault and cannot control or help their behaviors.

Cleaning and Dressing The Person

The one thing that is hard when trying to keep a person with this illness clean is trying to bathe the person. Fortunately, I do have four home health aides that are great. But, they often ask me to assist them when she is hard to handle. They told me they have daily schedule for bathing the person, feeding her and getting her dressed.
Always be kind and gentle when bathing the person and always pick out clothing that is easy to put on and easy to get off.
Explain, which they do, what you are going to do and why even if the person does not fully understand.
They always make sure that they have the soap, sponges and the showerhead ready when bathing her. She sits on a bench in the tub, which makes it safer and prevents her from falling. She has a railing up on the side so she cannot get out by herself.
If a shower is not possible using a handheld showerhead, then a sponge bath might be the next best option.
Dressing the person is often more difficult. You need to get the person dressed at the same time each day. The one thing that I know that is important is that the person, whether they are going out or not, should get dressed everyday. They need to have their hair and nails groomed and cleaned and look as normal as possible.
If the person with AD is still able to choose what they want to wear, then let them have the choice. It will make them feel better and show that they are being treated with respect and dignity.
I find that elastic waists in pants are easier for the aides to dress her.
Slip on shoes are the easier than tying knots in sneakers or walking shoes.

Eating: this can be a real challenge especially in the late stages of the illness. Here are some tips to making that easier for you as the caregiver.

If the person is having trouble chewing certain foods or if the foods are hard to swallow, you can puree the foods in a blender turning it into a softer consistency to be eaten. I find that when the aides make chicken soup and add pasta, potatoes, and other vegetables it is easier for my mom to eat the soup if it is pureed in a blender.
If the person is aware of what they might want to eat you might give that person some choices as to what they might want. I would limit the choices to 2 so as not to overwhelm the person without too much decision-making.
You need to choose foods that allow the person to eat independently and hopefully without having to be fed or needing too much assistance.
The one thing that is vital is that since the amount of foods or food the person consumes will eventually decrease as the disease does progress, you need to make sure that they drink a lot of fluids to prevent dehydration.
It is necessary to make sure that there is nothing in the foods that is difficult to swallow because as the disease does progress it will become harder for the person to swallow and you need to avoid them choking.

Incontinence: You need to make sure that the nurse assigned to your parent’s case or the person who are the caregiver for knows which Home Care Agency will provide the supplies needed on a monthly basis rather than having you pay for them out of pocket. You need to follow these tips too:

Set up a daily schedule for the person to go to the bathroom. The aides change my mom every 2 hours to prevent rashes, sores and chafing. They make sure that they have A&D ointment on hand as well as Destin or BalmX in order to make sure that she does not get any sores of any kind.
If the person starts to fidget and gets restless that can often be sign that the person should be taken to the bathroom on the spot. (If they are still capable of using the bathroom.)
Be aware that accidents will happen and you need to stay calm and be understanding. The first time this happened to my mom she was in the hospital and did realize that she was forgetting to go to the bathroom. She often rang for the nurse who never came. I think part of her problem came because she just didn’t get there in time and the poor staffing on her floor of people that did not really concern themselves with patients that are incontinent. I know that they do get busy and back up but it became apparent that this was going to be an issue. She did not want to wear the diapers and wanted to use the bedpan or the commode.
To prevent nighttime accidents, limit the amount of fluids the person drinks before going to bed.
If the person is aware of whether they need to use the bathroom and you are going on a long trip you might want to learn where the rest stops are located on your route so you can stop. Have the person take extra clothes in case of an accident. I know that with my mom we made sure that she had a depend or pull up diaper on top of her underwear to prevent this issue from causing her any embarrassment.

Sleeping and wandering

My mom does not sleep throughout the night. When we first found out she had the illness she even tried to leave the apartment and go shopping in the middle of the night. She left one morning and walked to the bakery to get bread. Not really knowing where and why she did that, she stopped a stranger in a car to drive her home. Lucky for her the person knew her. When I got the call from the aide that was late in coming to care for her that she was missing and finally found, I realized that we needed more help and more hours too.
Make sure that you enroll the person in the Safe Return Program from the Alzheimer’s Association. This is a program that helps you register the person with the necessary information needed to contact you in case the person gets lost. You receive 2 bracelets and a necklace plus labels. You can sew the labels into the clothing of the person and you can wear one bracelet and the person the other in case of an emergency both parties can be helped and contacted.
Keep a photo of the person in your wallet and on a table in your living room and in their home in case the person is lost and ID needs to be made by the police.
Keep a list of the person’s medications and other vital information handy including how much medication and how often the pills are taken. Post on the refrigerator along with their plan of care if you have home care.
Make sure that you put sharp objects out of their reach. Unplug toaster ovens and microwaves because they might forget to turn them off when they try to use them. Prepare meals for them and leave them in the refrigerator to be warmed by you or an aide. Make sure that the locks on the front door are too high for the person to open. Make sure if there is a back door that it is secured and locked and cannot be opened. You might want to have a keyed deadbolt or an additional lock that is too high for the person to reach placed on the front door of a house or an apartment. You might even add a chain.
These people get disoriented and cannot tell the difference between day and night. Assure them that they are in a safe place and safe environment. Never yell at them, scold them or make them feel like they did something wrong. Remember: It is the disease NOT THEM! Causing these behaviors.
As the disease gets worse the person might begin seeing things, hearing things and have delusions. Hallucinations are when the person sees, hears, smells and feels that something or someone is there but it really is not.
Delusions are beliefs that are false from which the person is so totally convinced that something is happening they cannot be dissuaded.

Never yell at the person and assure them that you are taking care of getting rid of whatever is upsetting them. I remember my Aunt Tova was given Haldol in the hospital and thought she saw squirrels on the ceiling of her room and thought that she left old bread and cheese in her freezer. She made my cousin call me and I told her that I would get rid of the bread and cheese and am right there to take care of the squirrels. She even told me she saw my Uncle Irving and my father Doc who have been gone a long time.

Join Hands: Understanding Goes A Long Way!

YOU COUNT TOO

Remember to make time for yourself and your family. Do not neglect your personal appearance or your personal needs. Make sure that you take time for yourself every day. Make sure that you develop an interest or a hobby and set aside time, as I do each time to pursue what makes you happy.

Make sure that when you feel stressed that you take a break and go out for a walk, rest or just read a book. You cannot be on 24 hours a day. Make sure that if the person needs an aide that you get the services needed in order to help you have some kind of life and time with your family.

I know that there is always one person in a family that gets the burden of the care. That of course is not right and not fair. However, you need to make sure that you get to go away even overnight or on a weekend in order to rejuvenate yourself and feel better. You deserve it. I know I need time off from giving my mom her meds every morning and every night. I sometimes feel like I am wearing a straight jacket that needs to be loosened. I wish that I could go away for a week but I know that is not in the cards. No one wants the responsibility of dealing with the agencies and the meds and the aides. It gets tough.

But, as I have been told so many times, you are doing the right thing and someday you will be blessed and rewarded. I know that I can look myself in the mirror and know that I have nothing to be guilty about and know that I am trying my best to keep my mom at home. I know that a person with AD has a limited life style. I promised her that I would never put her in a facility of any kind and I will not break that promise.

How do you know that you need to Get Help For A Loved One?
When my mom went shopping by herself to the bakery one morning and asked a total stranger to drive her home, I knew things were taking a downward slide. Asking her why she would accept a ride with someone she did not know, she looked at me and said, “ I have no idea what you are talking about. That lady is my friend.” She was a friend whose name she did not know nor did I.

When my mom began to exhibit the following behaviors my brother, sister and I realized we needed to get her more help than the three of us could provide. This is where you need to do research and a lot of legwork to make sure that you get the right help for your parent or loved one.

When someone is unable to remember things
Asking or repeating the same question or story multiple times
Lost in familiar places
Being unable to follow and understand directions
Getting disoriented about time, people and places
Neglecting personal safety, hygiene and nutrition
As in my mom’s case asking a stranger for a ride home
Wandering the neighborhood and not remembering their own address
Forgetting names and places
As in my mom’s case taking her meds more than the required number of times a day

Kindness Tips

Always say good morning when entering a patient’s room
Address the patient by name and tell the patient your name
SMILE!
Explain the task you are going to perform before you do it and explain the task as you are performing. Patients are often leery or afraid of strangers and need to feel confident and safe with you.
If a patient needs assistance bathing, eating or walking help them and do not leave them before they complete the task.
Patients that need help eating: You need to make sure that person eats and are fed. Make sure that you do not leave the tray untouched and if you have to feed the patient you need to do it with kindness and patience.
Ask the patient if they need help dressing or assistance going to breakfast or any other area of the home or hospital
If you are bringing magazines or books allow the person to choose
Never speak to a patient as if they were a small child
Speak to people with respect and as an adult
Making sure that the person’s environment is safe
Make sure you have a list of things that need to be done for that person and complete them
Meet with other volunteers and discuss their successes
When you speak to a patient make sure that you make eye contact and have their attention
Speak at eye level and speak clearly
Use simple and direct statements
Never raise your voice
Include the person in your conversation: Talk to the person not at the person
Never speak to them as if they are a third party and not in the same room
Speak to them as an adult not a small child
Listen to their concerns and show a lot of understanding
Never leave a patient in distress

Your Role Is Important and Valuable
There are many jobs that are special and important. Never think that because you are not getting paid to be a volunteer that it hinders your value, importance or role. Many of the people you come in contact with have no family members visiting, are afraid to be alone and might look forward to your visit, no matter how long or short, as the highlight of their day.

Just walking into their room and knowing that you are there to speak to them, perform a needed task or just sit and talk with can be the difference between someone giving up on life and feeling needed and special.

Everything you do has value and a purpose. Never allow anyone to tell you that you do not have be work or volunteer on a specific day because it does not matter since you are not getting paid. Work ethics need to be adhered to. Volunteer positions can lead to paying ones. You never know. Your time is valuable and what you are doing to help someone that is in these facilities is worth more than all the money in the world. Never sell what you are doing short.

Most Important and Final Notes

Remember to be sensitive to the needs of the person.
Understand that the diagnosis is upsetting and show compassion.
Remember to speak to the person as an adult and a human being and not a small child.
Communicate with the Alzheimer’s patient
Have an upbeat and positive attitude
Understand and learn how to handle behavior changes.
Expect that the patient will have memory loss and over time even more.
Get support for yourself and make sure that you do not neglect you.
Speak in short, familiar words, phrases and simple sentences. Repeat yourself if necessary. Stay calm.
Allow the person plenty of time to answer. If the person does not respond or answer reword the question.
Ask only one question at a time.
Never give negative instructions: Do not say don’t or Never or you better not: Say Let’s try this or Let’s go over here.

We are in this together!
Working together and helping them understand

Mobility is important and your assistance makes a big difference

Shopping can help them stay focused and feeling useful!

Your visit and care makes all the difference!

Helping someone with a smile makes a difference in the other person’s life.

Remember: Everything you do matters and is Special.

CAREGIVERS ARE SPECIAL AND UNIQUE!

Resources that I used for this pamphlet:
www.alz.org
www.nia.nih.gov
www.nia.nih.gov/Alzheimers
www.nia.nih.gov/Alzheimers/Publications/caregiverguide.htm#intro
www.nia.nih.gov/Healthinformation/Publications/forgetfulness.htm

(You may reproduce this guide or pamphlet to use for meetings and to train volunteers. You may not sell or use this for commercial benefit or profit.)