Because We Care - Sample Chapter
Part One: Caregivers: Why You Are So Special
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 reenter 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 change 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 everyday. 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
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. Everyday 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:
a. I find that speaking slowly and softly in a calm voice does help to calm the person down.
b. Speaking in simple sentences and short phrases does help.
c. 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.
d. 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.
e. 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.
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