Decisions & Sacrifices That We Make

We as Family Caregivers make decisions and sacrifices every day in the care of our love ones. I made the decision that my 89 year old mother with dementia would live in her own home and be taken care by myself and occasionally by certified nursing assistants (CNA). As primary caregiver, I sacrificed the time I could have spent with my teenage daughters. I sacrificed my career and who I was as a person to focus on the care of my mother.

I was watching a movie My Sister's Keeper with Cameron Diaz that spotlighted the decisions and sacrifices that family caregivers make in the care of their love ones. Cameron Diaz played the mother and primary caregiver for her daughter who had cancer. She had to choose between the needs of one child against the needs of her other children and her relationship with her husband. Cameron Diaz's character chose her daughter with cancer over the needs of her son and younger daughter. I'm curious what decisions and sacrifices did you make as primary caregiver for your love one?

What is your escape?

We Caregivers need an escape in our lives and for me the World Series San Francisco Giants provided me with a GIANT Escape from my life as a caregiver. I became a San Francisco Giant fan as a child when our dad took my brother and me to our first major league baseball game , eating peanuts, popcorn, and hotdogs and singing Take Me Out to the Ballgame was pure heaven.

Today, it's a three-hour escape from taking care of my mom who has dementia. I could listen to the ball game on my AM/FM portable radio while taking mom to the bathroom, cheer Cody Ross as he hit two home runs in the playoff game against Philadelphia, and finally hugging a complete stranger next to me when the Giants beat the Texas Rangers for the World Series championship.

What is your escape? Is it getting a massage or taking a long walk on the beach?

Profile of your Love One

I first developed my mom's personal profile for the nurses, CNA's, physical therapist and doctors so they would know who she was as a person. I wanted to let them know that mom came to this country as a war bride in 1947 by ship with my 6-month old brother and that it took two weeks to arrive in the United States. I wanted to let everyone know that she was a full time house wife living in the same home that my parents bought in 1955. I wanted to let people that she love soap operas and gardening. I wanted everyone especially her caregivers to know who she was before she developed dementia and who she was now with the goal to establish a stronger bond between her and her caregivers.

Here's a profile of my mom that I provided her caregivers and any medical facility.

• My mom needed her glasses to see and that she had great eyesight reading out loud every sign on the streets and freeways.
• My mom went out everyday to the parks, shopping centers, with the help of a walker.
• My mom needed guidance and help to walk to the bathroom 24/7.
• My mom does not plan or cook her meals.
• My mom loves going to the dog parks in Alameda while eating her McDonalds lunch from the car.
• I also provide a mini-family album and pictures of her with the caregivers.

Legal Things to Take Care of

• What are your love one's wishes for medical procedures
• Living wills.
• Updated auto insurance
• Medical power of attorney for health care concerns
• Power of Attorney for legal decisions
• Access information or keys to safety deposit boxes, emails, medical websites, social networks
• Financial power of attorney to take care of bills

Changes Part 5

Three months have past and I got an email notification to have mom x-rayed. As always mom had difficulty getting x-rayed but we got it. The shadow on the previous x-ray still exist but at least it hasn't increased in size. The next step is to get a CT scan but trying to get a 89-year old mom with dementia will be difficult.

According to several medical articles and private discussions with medical people a "shadow" could be just about anything. In a 89-year old woman who has never smoked in her life the "shadow" is not cancer although discussion with a pulmonary doctor should be scheduled in three months after another x-ray. According to a radiologist X-rays are full of shadows and light which the radiologist must interpret- so much depends on the angle at which the person is standing, the angle of the camera, how close or far the patient is from the camera and a host of other things.

The last X-Ray had the radiologist holding my mom up inorder to get an X-Ray...not exactly the correct way to have an X-Ray.

Changes Part 4

Radiology department found a shadow in my mother's lungs.

Doctor recommended that we X-ray her lungs in three months. I could worry but what's the point. She's able to walk with the help of her walker and caregivers. She goes out everyday and wander shopping centers. She still lives in her own home and have meals in her kitchen. Her life looks good to me.

Changes Part 3

My 89-year old mom who could not stand or walk a month ago is now walking short distances with the aid of a walker. Mom's femur, knee and her total-hip replacement have been X-rayed; two lab tests and a ultra scan to check her liver. The results NADA, negative, absolutely nothing, zilch, etc. I would like to thank Kaiser Hosptial Oakland X-Ray technicians who had to deal with an extremely difficult and strong 89-year old lady, her Alameda-based doctor and HealthCare At Home nurse and physical therapist. I am not an active religious person but I did pray a lot this past month; Special Thanks to God for listening to my prayers. I would also like to thank the entire CareGiverGuy Nation for all their support, prayers, and (116) emails.

Changes Part 2

Changes...is always challenging and at times frustrating for the love one and for you as a caregiver. We're going to see the doctor today to see if there is any physical or mental changes that have occured. Right now, she's not able to get out of the bed, chair, and toliet without assistance. It is physically challenging for me and her caregivers to move her but she can walk with our assistance but you need to place your forearm under her arm pits and place your body directly behind her to make her feel secure. She can walk but now her world has gotten a little smaller. We need to be educated on how to manuver her from her bed to the toliet to sit up without her assistance. In most facilities most caregivers can receive help from their colleagues but in a private home you're all alone. She's sleeping or laying down more so we have to be concern about bed burns and keeping her mentally and physically active. I also need to know that my current caregivers can physically and emotionally handle this new change in my mom's life. I'm a strong guy but lifting her and moving her has been physically challenging.

Changes...

Changes...with my 89-year old mom happened overnight. She woke up one morning and she was scared. She was afraid to get out of bed and held on to the headboard with great strength. She always wakes up in the middle of the night and walked to the bathroom and pee but last night was different. I told her "let's go to the bathroom" and I saw fear in her eyes. I tried to move her legs to the floor and mom just yelled. I tried to get her up by supporting her back with my hands but she just screamed like she was in pain. I tried again and without touching her back with my hands she screamed again. I finally got mom's feet touching the floor and finally sitting on the bed. She was still scared but finally held on to the hand grips of her walker and stooded up...but I had to place my forearms under her armpits to support her and stood right behind to make her feel safe. She started to walk very gingerly and for the first time she pushed her walker rather than pick up the walker. I noticed small changes...she didn't know where the bathroom was...she didn't want to go outside and walk...she didn't want to go in the car and she stayed in bed during a good part of the day. She did walk around the house however always with the help of her caregiver or me. We have an appointment with her doctor on Friday and this week I've been educating her caregivers with the new "Changes."

Care.com Update

Want Ad for a Caregiver in Care.com

I am seeking a part-time caregiver who has experience with dementia. My mom is 89-years old, Filipina and is still living in her home. My Monday and Tuesday caregiver who has been with us for a year will be moving on as a new assistant teacher. The caregiver MUST live in a 10-mile radius of Oakland, California and have transportation with insurance. Please DO NOT apply if you live outside the 10-mile radius of Oakland. Mom takes her walker and has daily walks in parks, shopping centers, doggy parks, and senior citizen recreation centers. Mom uses a walker and is able to go to the bathroom with assistance. I want a caregiver who will stimulate mom with physical and mental activities. Hourly rate is $12.

This is my first want ad for a caregiver in www.care.com. It's a simple process and very cost effective than Craigslist ($75) or any other newsmedia. I became an official member for 30 days and placed an ad for $30. I could have applied for the 3-months member or a 1-year member but I felt confident that I could find a caregiver within that time. I found care.com communication between family member and caregivers very effective and provide some safety for caregivers because emails are onsite. I have received emails from 18 caregivers from the bay area but I found one common thread from placing ads in care.com and Craigslist. Caregivers do not read or understand my requirements that I want caregivers who live in a 10-mile radius of Oakland. I received emails from San Jose, Fremont and San Francisco; all outside the 10-mile radius of Oakland.

Care.com also provides a limited and free background check on all their caregivers on request. They will also provide an extensive background check for a fee. The website provides family members a profile of all their caregivers and sometimes a picture. Finding that right caregiver is like joining several dating services and looking for that right one. I would highly recommend Care.com as an excellent source to find a caregiver.

Murphy's Law

Murphy's Law - "Anything that can go wrong will go wrong."

Life for a caregiver is a rollercoaster of Murphy's Law events. My life managing a staff of caregivers was running very smoothly and even when there was a blip on the system I was ready for the opportunity to handle the blip.

The first blip was my mom's part time caregiver who handles the Monday and Tuesday daytime shift informed me that she would be moving on to a new job after a year caring for my mom. I was ready and looking forward to retaining a new caregiver through www.care.com/ nationwide service. The second blip was the laptop computer that we used for Safeway grocery orders and Netflix DVD deliveries was attacked by viruses. The third blip was Comcast services went haywire so Mom and the caregivers received only half the cable stations. What was really frustrating was Comcast's customer service stated that it would take four days to get a repair person out to the house. The fourth blip was my cell phone screen froze and I spent 45 minutes talking with a T-Mobile customer service agent only to tell me that you need to upgrade to a new phone. Upgrade means you need to buy a new phone dummy. The fifth blip was mom's new caregiver has only five months experience driving a car. The sixth blip was Mom got focused on visiting the cemetary which delayed my flight plans. The seventh blip was my fellow passenger soaked me with her can of soda. The eight BIG blip was a family member got a diabetic seizure but he's OK. Today was a relatively good day...nobody got hurt or died just lots of blips.

I Am CareGiverGuy!

Wendy of Miami, Florida asked me "Why do you call yourself CareGiver Guy?

My first answer is because I was the only male caregiver at my support group meetings but now I would respond in a different way. As a young boy, I was fascinated by DC Comic's SuperMan.

"Faster than a speeding bullet! More powerful than a locomotive! Able to leap tall buildings at a single bound. Yes, it's Superman, strange visitor from another planet who came to Earth with powers and abilities far beyond those of mortal men. Superman, who can change the course of mighty rivers, bend steel in his bare hands' and who, disguised as Clark Kent, mild-mannered reporter for a great metropolitian newspaper, fights a never ending battle for truth, justice, and the American way"

Every morning, I and millions of other caregivers nationwide wake up and we put on our CareGiver Super Uniform and in one single bound we take care of our love one. We are special people willing to quit our jobs, have no social life, leave your family and friends, move into your parent's home, live a isolated life, and the willingness to care for your love one.

When we step outside in our real identities at family gatherings, shopping centers or for just a walk in the neighborhood...I hear their comments "you're such a good son, your father would be so proud of you, God will bless you, I haven't seen you in a long time; where have you been, I've been planning to stop by but I've been so busy, why don't we get together and have coffee, etc." We are the invisible segment of our population. We are invisible by the state and government when they conduct their unemployment surveys but we are working.

In my real identity, I feel tired...I feel frustrated...I feel anger...I am tired of the repetitive questions, I am lonely...I am tired of not getting real help from my friends and family...I am tired of living in my own Groundhog Day that never ends, but only repeats, I feel dispair...I am tired of feeling sorry for myself, I miss my real mom, sometimes I feel nothing BUT every morning I put on my CareGiver Super Uniform and I am strong again until one day my Kryptonite strikes and I break down or end up in the hospital or die...it has been the fate of many caregivers but I decided no more...it's time to begin a new life.

Flashback….”I’ve fallen and I can’t get up”

A friend of mine from Tennessee was talking about her mother-in-law who was living by herself and the subject brought back memories of my brother who was the primary caregiver of mom after dad's death. My brother in 1991 died and I became the primary caregiver. Mom didn't have dementia at the time but she was living alone; although quite capable of living by herself I was still concern because she was 79-years old and alone. We have all seen the commercial with the old lady screaming "I've fallen and I can't get up!"

The objective behind the commercial is that senior citizens like my mom would receive a medical alert pendant that would allow our her to call out (verbally with her voice) to an audio receiving device and talk directly with a dispatch call operator, without the need to reach a telephone. The service was designed to appeal particularly to seniors who lived alone and who might experience a medical emergency, such as a fall in the bathroom, which would leave the parent alert but immobile and unable to reach a phone WRONG...the commercial was designed directly at the adult children whose parent lives at home ALONE.

My mom fought tooth and nail whenever I brought up the subject because she has also seen the "I've fallen and I can't get up" commercial. Mom looked at me with that superior look "I am not old and I can take care of myself" and I said I will hire a live-in caregiver if you don't wear the pendant. She finally relented and said "I will wear the pendant."

Here's an update version of the commercial; http://tiny.cc/cUAM9

FlashBack - She's Fallen

Every morning I call mom to wish her a great day and to remind her to wear her pendant. Every Sunday we test the pendant together in different rooms to make sure she understands how it works inside the house and outside in the garden.

Several months have passed...

It was a typical day for mom. She ate the same cereal and toast for breakfast. She watched Regis and Kelly; then changed channels to watch her favorite Soaps. Around noon time, she went outside to inspect her flowers in the garden but for some reason she left her walker on the front porch. She inspected her roses and losted her balance. She called for help and then pressed her medical alert pendant.

Activating the medical alert pendant outside her house but within the range of the monitoring device alerted the emergency call center. The emergency alert operator would have called out and because mom was not in range of her voice she proceeded to call the names on the emergency call list. I was the first person on the list and because I left my cell phone on my work desk when I went to the restroom; she proceeded to call my mom's next door neighbor "Mr. Thomas." He volunteered to be on the emergency list and had a key to mom's house in case she fell inside the house. It's important that anybody on the list have a house key because otherwise the firemen will have to break down the door or windows.

"Mr.Thomas" found mom outside in the garden and he called 911. She broke her hip. I received another call from the dispatch center to let me know of the situation. If mom did not have the emergency pendant and the knowledge on how to use it; she would have been outside in the garden for hours.

Managing My Mom's Caregiver Crew

My mom has three full time caregivers and one part-time caregiver. At the end of their shift, each caregiver will email a report of mom's activities, eating habits, daily mental and physical activities, and anything unusual to my designated head caregiver. She provides me a daily email report every morning and will call me just to chat. The head caregiver, who is a former nurse, does all the Safeway delivery orders, Netflix request, conducts blood pressure testing every week, ability to request an emergency caregiver through an agency, and someone I TRUST.

This caregiving system allows mom to stay in her own home and gives me a LIFE after several years of taking care of mom. It's not the perfect system because it's extremely expensive but my work provides the income to make it work.

Care.com - New Resource for Families Seeking Caregivers

Families, there is a new nationwide resource for finding that special caregiver for your love one. The new nationwide resource is http://www.care.com/. I joined up for a thirty days membership and found the service like a dating service.

I entered all the necessary information of my mom who has dementia and checked off the requirements for the caregivers. Based on my requirements the best caregiver for my mom is between the age of 26 to 30 years old, a non-smoker, no caregiver agency, has transportation with insurance and lives within 5 miles of my mom's house. Mom still lives in her home. The caregiver data search delivered six possible caregivers.

If you like a specific caregiver you can send a message to the caregiver to set up an appointment. Care.com provides a limited background check or for a fee provides you with a indepth background check. The bottom line for any search for a caregiver is the depth of qualified caregivers that meets your qualifications. So far I have not found that special caregiver for my mom. I'm a little unusual because I currently manage a staff of three caregivers and one part timer. I designated one of my caregivers, a former emergency nurse and has a strong management background to be my head caregiver. I live in Los Angeles but I visit mom almost every other week.

Mom's caregivers take her out to shopping centers, doggie parks and senior citizen activity centers every day. Two of my caregivers are filipina and speaks Tagalog however, mom does not speak the language anymore. Finding the right caregiver was not easy.... Craigslist, word-of-mouth, caregivers agencies, nursing schools; all the above. I have a person who can provide a detail background check and I am now experienced in qualifiying caregivers on the phone and during my indepth interviews. The bottom line is the interaction between mom and the caregiver. I wish care.com was available several years ago as one more resource.

Life after CareGiving for your Love One

Life after Caregiving for your Love One begins with the death or extreme health concerns or because you just lost it. I lost it. I lost the patience to deal with someone with dementia. It can happen after one year or several years. I had caregivers to help me with mom and give me a break but I just lost it.

I began my life by hiring a live-in caregiver but after 6 months she couldn't handle it by herself. I have now three full-time caregivers and one part-time caregiver working two 10 hour shifts. I have also designated one caregiver as the staff leader that each caregiver sends their reports to. The staff leader has the ability to hire a temporary caregiver through an agency when needed. I'm also looking for a new caregiver to replace one of the staff caregivers when she graduates from nursing school.

I am in the best health of my life but I am still responsible for the management and care of my mom. I have a "What If" plan in case something happens to me...a domino phone call takes place to make sure mom will always be taken care of. I can now take a deep breath, read my newspapers, drink my Peet's coffee and share my life with someone.

"Four Kinds of People In the World"

Rosalyn Carter, wife of President Jimmy Carter, said it best: " There are only four kinds of people in the world - those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers."

Quotations, Quotations, Quotations

"My years as a medical practitioner, as well as my own first-hand experience, have taught me how important self-help groups are in assisting their members in dealing with problems, stress, hardship and pain...the benefits of mutual aid are experienced by millions of people who turn to others with a similar problem to attempt to deal with their isolation, powerlessness, alienation, and the awful feeling that nobody understands. Health and human service providers are learning that they can indeed provide a superior service when they help their patients and clients find appropriate peer support."

Former U.S. Surgeon General C. Everett Koop, MD

Mutual support groups, involving little or no cost to particpants, have a powerful effect on mental and physical health. The psychological and physical health importance of this diffuse community is striking...The self-help movement, both in face-to-face and virtual arenas has tremendous therapeutic potential."

American Psychologis feature article "Who Talks? The Social Psychology of Illness Supportr Groups" by K. P. Davison, J. W. Pennebaker & S.S. Dickerson

"Alone we can do so little; together we can do so much."

Helen Keller

Quotations provided by ED

First, Care for Yourself

"On an airplane, an oxygen mask descends in front of you. What do you do? As we all know, the first rule is to put on your oxygen mask before you assist anyone else. Only when we first help ourselves can we effectively help others. Caring for your yourself is one of the most important - and one of the most often forgotten - things you can do as a caregiver. When your needs are taken care of, the person you care for will benefit, too...."

Family Caregiver Alliance
http://tiny.cc/TwwAM

More CareGiver Guys!

It's been awhile since my last visit to a local caregivers support group but I was very surprised at the number of men at the meeting. I no longer felt alone surrounded by women caregivers although we have common frustrations and problems being the only caregiver guy was lonely. I don't feel alone anymore.