Showing posts with label Caregiver. Show all posts
Showing posts with label Caregiver. Show all posts

Sunday, November 13, 2011

National Family Caregivers Month

(Google Image) 



By Diane Forrest, RN

A friend of mine's son was recently admitted to the hospital.  What initially started as a simple stomach virus nearly claimed the 34 year olds life.  He was transferred to a larger hospital and placed on the ventilator for 2 weeks while his family waited helplessly in the ICU waiting room.  His wife, mother and father paced the floor endlessly waiting for some word from the doctors for a diagnosis of his condition and signs of improvement.  While this experience was difficult for the entire family, the mother, my friend was particularly stressed.  While she waited for news about her son, she was also concerned for her mother.  She is the main caregiver for her mother, and during this time she was unable to see to her needs.  Fortunately her daughter, who also lives in the same town was able fill in and perform the tasks while her mother was away.

The young man is recovering, still not knowing the cause of his illness, all the family returned home and back to their lives.  My friend returned to the care of her mother, while her daughter returned to her home to take care of her family.

The role of the caregiver is never truly realized or appreciated until there is a change upsetting the balance of things.  This experience has hopefully taught her mother how much her daughter does for her, and that her service is invaluable.  Being a caregiver in a family is a very hard job, especially if you have several people in your family that needs your care.  My family has a long line of caregivers.  My great aunts took care of their mothers, my mother took care of her mother and aunt, my aunt took care of her neighbor, and I spent the last 15 years taking care of my husband.  Caring for a family member is physically, mentally and emotionally draining.  The demands of taking care of an older or sick family member as well as taking care of your family and yourself is exhausting, but it is not without its rewards.

November is National Family Caregiver's Month.  In 2008, President Bush signed a Proclamation stating, "During National Family Caregivers Month we recognize and celebrate the many individuals throughout our country who work each day to ensure a better quality of life for their family members. Through their selfless action, these caregivers provide their loved ones support and comfort as they age, combat illness, or suffer from disability."

(Google Image)

If you have someone in your family who is responsible for the care of another, why not take this day to give them a call, send a card, take them to lunch, or take lunch to them or even offer to take over for them for a few hours.  I know that any form of recognition you offer will be greatly appreciated.

For more information about caregiving visit these sites:  http://www.nfcacares.org/press_room/detail.cfm?num=114

http://thefamilycaregiver.org/national_family_caregiver_month/?gclid=CPWj_aC1qawCFcuP7QodFWitBg

Thursday, June 16, 2011

Caregiving from a Caregiver's Perspective - Part Five

by Diane Forrest, RN


Part 5 - Caregiver Safety

Being a home caregiver means not only do you take care of the physical and emotional needs, but you must also practice preventative and safety measures.  There are many reasons why a family member may need home care.  The first reason that comes to mind is age.  As we age our eyesight becomes weaker as well as our hearing and muscle tone.  You need to check your home for your family member's safety as you would baby proof your home for a new baby.   Check each room for potential hazards.  Two of the main areas for potential accidents are the kitchen and bathroom.

In the kitchen:

  • Make sure there is proper lighting
  • Keep all electrical cords secured and out of the way
  • Check for any flammable materials and make sure they are in a safe place.
  • Keep sharp knives in a Knife block or easy access drawer
  • Secure or remove throw rugs.
  • Quickly clean any spills or splattered grease from the floors to prevent slipping


One of the first things anyone in home health nursing will tell you is to remove throw rugs.  These cause many accidents as they can cause trips for seniors with unsteady gaits.  We had a physiatrist (physical therapy doctor) come to our home with his therapist.  Both made their own separate report about things to be done to our home for my husband's safety.  Each of them had placed remove all throw rugs.   Well as a nurse, I did not see how this would possibly be an issue, since my husband was paralyzed and at that time was in a wheelchair.   I have hard wood floors and tile in the kitchen and bathroom for the use of the wheelchair.   I also have throw-rugs at each outside door, in front of the kitchen and bathroom sinks, and in front of the shower.   Providing safety measures mean keeping everyone safe, not just 1 person.   My solution to the rug issue was to place double sided tape around the edges of the rug and secure them to the floor. 

In the bathroom:

  • Install grab bars around the shower and tub as well as around the toilet
  • Install a "handicap" toilet; these are only slightly higher than the traditional toilet, and much easier to get off of.
  • Keep the floor free from clutter
  • Install grounded outlets around the sinks and tubs
  • Make sure there is plenty of lighting in the room
  • I have a friend who travels with her own light bulbs to make sure she can see because most hotel rooms or even family guest rooms only use a low watt light bulb.


In the bedroom:

  • Provide a side rail.  My husband was in danger of falling out of the bed.  I located a half-length side rail that slid under the mattress.  He felt safe being protected from falling, but not imprisoned in the bed. 
  • Place a table lamp beside the bed
  • Place a telephone beside the bed


Other Rooms:

  • Again, make sure there is plenty of lighting;
  • Keep any cords off of the floor, or secured; and
  • Arrange furniture so there is an easy path for walking.
When my husband became bedridden, there were many issues that came up that I had not given thought to.  Since I was always here with him except for trips to the grocery or drug store, I guess these things never entered my mind.  We were visited by a company to inspect the house for the purpose of installing a lift, and one of the employees brought these items to my attention:
  • Remote control locks
  • Outside video surveillance


While we live in a safe neighborhood in a small quiet town, I never thought about leaving him for an hour or so with the door unlocked.  It never occurred to me that he may not feel safe.  I didn't want to lock the door in case he needed help and no one could get in.  However, we had a tornado come through our neighborhood.  When it was over, I went out to take pictures to bring back for him to see.   I wasn't gone long, maybe 15 minutes because trees were blocking the roads.  During that time a neighbor walked in to check on him and it startled him so much that he never wanted me to leave with the door unlocked again.  A remote control lock and video would have made things more secure for him.

Also, always make sure that a telephone is available within reach, and fully charged.
The main thing is to make sure the surroundings are as safe and secure as possible.  If you have any other ideas or experiences, please share them with us.

Summary


During this 5 part series of home caregiving, I have tried to share with you some of the tips I have learned, and share some personal experiences with you.  It was my purpose not only to help those who are new to providing home care for family members, but also to let you know that you are not in this alone.  There are many people facing the same things every day. 

To recap on the issues covered:

Listening, not only hearing what is being said, but actually listening to the problems, concerns questions your loved one is trying to communicate to you.  Listening is a lost art, and to properly listen you have to remove all distractions and noise, and focus all your attention to what your family member is saying to you.
Next we talked about keeping your sanity and listed some activities for you to do to help with that such as:

  • Hire someone to come in a few days a week to perform routine care;
  • Enlist family members to sit with them;
  • Take some time off, go to a movie or out to eat;
  • Get a massage or manicure, get your hair done;
  • Go to church or join a club;
  • Walk around your neighborhood;
  • Find a hobby; and
  • Join a support group.


Our next subject involved taking notes about what different or unusual things that were happening with your family member.  Keeping a record of what changes that were going on is not only beneficial for you but also important information to share with the doctor, insurance company or other family members.  Keeping good records is also important in tracking any health trends that continue to occur such as infections or eating changes or mood changes.

We then covered the actual physical care, the importance of monitoring for any changes in skin and nutrition as well as maintaining dignity and respect and privacy for your family member.
Finally we discussed safety issues in the home, the importance of making your loved one feel safe and secure and keeping them safe from accidents and injuries.   There are many websites that can give you information or support while you are going through this part of your life.   I am always available to answer any questions, provide information, or just listen to your problems.   The main goal is to provide a safe and secure environment and to help in maintaining the best possible health for your family member.  It is a very tough job, but also a very rewarding one.  Nothing can take the place of providing peace, comfort and care to your family.  It may not always be easy, but the gratitude you receive more than makes up for the hard times.

Note from Terry.  Thank you Diane for sharing your story with all of us.

Caregiving from a Caregiver's Perspective - Part Four

by Diane Forrest, RN

Part Four (It’s a tough job, the physical part of giving care)

Taking care of a family member is a tough job but also a very rewarding one!    So far I have talked about how to listen, how to take care of yourself, and how to write notes. Now how to do the actual work.  Each person's experience is different.  Some family members require more care than others.  For example, my grandmother lived to be 86 years old.  During the last 6 years of her life she lived with my parents.   She had no medical problems, was alert, and was able to perform her personal needs.  She moved in with my parents because she lived far away, and my mother didn't feel safe with her being alone and not being able to get to her fast enough should a problem come up.  The care she provided to her mother was minimum.  Providing food and shelter and companionship was all she required.

My husband's aunt, who is 95, lived with her husband, 90, in a senior apartment complex.  They required no care until the uncle passed away suddenly from a heart attack at home.  His death caused the aunt to have bouts of confusion.  Her granddaughter decided to bring her to live at her home, but she became disoriented and combative and destructive.  Having small children at home, she opted to place her grandmother in a nursing facility, where she could be cared for and be safe from harming herself or others, but continues to oversee her care and provides basic necessities and companionship.

Another married couple, in their 80's were living together without any problems until the wife had a stroke.  Her husband took great care as long as he could, but it became too much for him.  She was moved to a nursing facility, however he gets up every morning to get her up and ready for breakfast, helps feed her, spends the entire day with her and puts her to bed each night.  They recently renewed their wedding vows having been married for 65 years. 
http://www.enterprise-journal.com/news/article_9f9969ea-3731-11e0-b053-001cc4c002e0.html

On New Year’s Eve, a 17 year old boy in my town was involved in a car accident, leaving him paralyzed below the waist.  He requires assistance getting up and laying down, but is able to care for himself in every other aspect.  Then there was my husband, who was bedridden and required total care. 

Each of these relationships; parent, child, grandparent and spouse, require different types of care, however, the ability to provide care may be difficult for some.  The first and probably main issue to conquer is embarrassment.  Body image is a powerful thing.  When you spend the first part of your life being cared for by your parents, then later in life to return the favor to your parents can be a difficult chore. It's one thing to have your mother change your diapers when you are a baby, and it's totally different to change your mother's diaper.  Not only do you want to respect their privacy, but you also want to make sure that no problems are developing. 

When I told you about the SOAP charting, I mentioned that A stands for assessment.  This is best done first thing in the morning during morning care such as bathing.  If the person you are caring for is able to perform this action for themselves, then you will need to be close by, offer assistance and support. If they require assistance, the first thing is maintain privacy.  For example, while my grandmother was at my parents she was able to perform self-care.  Once she had a spell of confusion and my parents were out of town and asked me to stay with her in case she fell or became disoriented.  When it came time for her shower, I placed the necessary equipment within reach for her, kept her covered with a towel while assisting her out of her clothes.  Assisted her into the shower stall before removing her towel, then had it ready for her to wrap in once the shower was complete.  Minimum exposure is necessary for maximum comfort.
The most important tool for providing comfort is conversation.  While the procedures you are doing may be embarrassing for you, imagine how the other person feels.  Simply chatting during this time will ease both parties involved.  Talking about the weather, the neighbors, the children or grandchildren will take their minds off what is going on, and will put you both at ease.

My husband was an extremely shy person, even with me.  It was very stressful for him when I had to perform his catheter care.  He was concerned about changes in his body and his appearance.  I was aware of these concerns, and during these times I made sure to have him completely covered, except for the area I was working on, and constantly reassured him that my love for him had not changed.   In the last year, his doctor had ordered home health visits once a week to help me with his care.  While he loved to flirt and "carry on" with his aide, he made it perfectly clear that he did not want her to see his body.   I explained this to her.  Even though she was there to help bath him, and he didn't want that help, it was important that he have interaction with someone other than me.  We devised a plan to allow her to wash his feet.  He was completely covered except for his feet.  He enjoyed his weekly soaks and spending time with someone other than me for an hour a week.  When I questioned him about why he didn't want anyone else to do his care he would say, well ... what if it was you laying here, would you want someone looking at you and washing you all over?  Of course, I wouldn't like to be in that position so I tried to use this reasoning each day as I cared for him.  How would I feel?  What would I want done or not done?

Some things are easier to take care of than others.  Cuts or scrapes are not embarrassing problems to tackle.  Fingernail and foot care can be enjoyable for the person on the receiving end.  Once you get to other problems such as catheter care or bowel evacuation things get more personal. These things are necessary, just try putting yourself in their place, and imagine how you would want to be treated.

While I was in nursing school I was assigned the patient nobody wanted.  He was a 17 year old boy who had been in an accident.  His injuries were not critical, having a broken leg.  His father was with him constantly, and was quite a bear!  He would yell and scream at everyone, nobody wanted to go in that room.  I was faced with a problem.  I had a job to do, a patient to take care of, and a bulldog to get past!  When I first entered the room for my assessment and talking with the boy and his father I determined that the main problem was fear.  The boy was afraid of being hurt and exposed while the father was afraid of the possibility of the fact he could have lost his son, and he didn't want to see him in pain or distress.  I began by putting them at ease.  I noticed a baseball cap with a company logo, the same company my father worked for.  I began talking about that with the father until he began to relax.  Then I noticed the boy, who had been hospitalized for about two weeks by this time, had greasy hair.  It has not been washed since he had been admitted.  Just a simple job like a shampoo made the boy relax and his father relieved so that I was able to complete the day without any problems and perform all the necessary procedures without any resistance.  In fact they were both so grateful they sent a box of candy to me at the school.

So, remember that while you are caring for your loved one to put yourself in their shoes, imagine how you want to be treated and things will go much smoother for everyone.  Like the Golden Rule says, “Do unto others, as you would have them do unto you."

Wednesday, June 15, 2011

Caregiving from a Caregiver's Perspective - Part Three

Part Three Taking notes

One of the main duties of a nurse in a medical facility is charting.  From the minute you meet a patient you begin writing, asking questions, filling out forms.  After about an hour or so you have become well acquainted with the patient, his past medical history, his family's medical history, and current problems. Some people become quite aggravated with this process, others enjoy it.  It is the job of the nurse to make it as painless as possible.

My father recently went to a doctor in a building that houses several doctors’ offices.  He went in, filled out several sheets of paper, giving them every bit of information including his shoe size and favorite color (not really. he just felt that way).  Immediately after he had finished he was sent to a physical therapist in another office a few doors down.  When he entered the office, he was handed another stack of forms to fill out asking the same information.  Well...needless to say my father refused to spend more time answering the same questions and told them to either get a copy from the other Doctor, or he was going home.
 HIPPA laws require that nobody has access to your medical records but you and your physician, unless you give permission of course.  The best way to handle a situation like this is simply to interview the patient.  This will put the patient at ease, allow for one to one contact, and depending on penmanship, will allow you to read the information as well.

 When I began taking care of my husband, I stopped charting, didn't feel the need.  I mean, it was just him and me, and I was taking care of him every day.  There was nobody to report to.  It was not like there was another shift coming, or doctor's rounds.  But then, my husband had to be deposed for his worker's compensation case.  The lawyer for the company he worked for wanted specific information, such as dates and actions, which I of course couldn't provide.  That day I went to the store, got a notebook and some page separators and started a medical chart on my husband, because I didn't want to be caught with my britches down again.

 The first page of my chart was like a front page of a hospital chart.  It listed his Name, Social Security number, address, phone number, insurance information, doctor's name and address, next of kin, known allergies and immunizations.  The next section listed his medications.  It included the name of the drug, strength of the drug, number of times to take it, and since he had multiple doctors, I included who prescribed the drug.  I also had several copies so that each time he was transported to the hospital or doctor; I could simply pull a sheet and have all the information available, especially in emergency situations.

 The next section included a list of supplies.  It listed the name of the supply, the company that manufactured it, and the order number.  I added a column to that page later listing the date ordered and received when we were switched to a different provider, and we had problems getting orders in. 

Next was a section on Doctor visits and hospitalizations.  It included the name of the doctor, date, reason for the visit, and outcome of the visit. 

 Since my husband was incontinent, and used a catheter, the next section was for input and output.  For this section I printed out a calendar for the month. I would put the total for each day, on the day of the month it occurred.  Now you are probably wondering, how could she possibly remember everything for the whole day to write it on the calendar?  Well...I printed out a weekly calendar and placed it on the refrigerator.  Every time I got a drink, I would simply write it on that day.  At the end of the day, I totaled it all up.  Since my husband's urine was measured in cc's I converted the fluids he drank into cc's as well.  This is not as hard as it sounds.  For my husband, he drank sprites in a can.  I poured them into a large plastic cup with a cap and straw so he wouldn’t dump them in the bed.  1 can drink is 350 cc's (this information is on the can).  I made a chart from 1 to 6 cans, and what the total would be.  That way, I wouldn't have to be doing a lot of adding.  1 cup is 250 cc's, and if you drink something that is bottled it will tell you what the amount is.  Milliliters and cc's are the same thing. I would also put a check mark on the days he had a bowel movement, if there was more than one, I would just put a check mark for each one.  This is good for making sure there is no constipation or impaction.

The last section in my "chart" is for notes.  I will talk more about that next time.  I don’t want to overload you with too much information.  So I will let you digest this and see you again soon.

In the hospital, some nurse’s chart by a method called SOAP.  This stands for Subjective, what the patient tells you; Objective, which includes actual facts such as vital signs, lab values; Assessment, findings during an actual examination; and planning, measures that are planned to fix the current problem.  Of course when you are taking notes at home, it is not necessary to get so technical. 

 Last time I gave you the information for Objective charting.  That included medication history, input and output history, supplies, and doctor visits.   The last section, notes, will include subjective and assessment information.  The most important part of gathering information for this section is the interview.  Now...I’m not saying you need to be Barbara Walters with a list of question that eventually make someone cry.  It's simply having a simple conversation with your loved one.  While this needs to be done daily, you don’t have to actually write notes daily, just write when there is a change in their condition or behavior.  A typical start to your interview can begin something like this:

"Good Morning!  How are you today?"

This question will orient someone to the time of day, and will give you subjective information...such as...Well I feel fine, or, I could be better.

If you get the first response, then you could ask, "How did you sleep?"  If you get the second response, ask “is something bothering you." or "How could you be better?"

Communication with your family member is not only important to determine if there is a problem going on, but also its just important for your family member to have communication with someone, to be able to share thoughts, feelings and problems.  Finding out quickly if there is a change in their status will enable you to get them the help they need faster so that the problem will be corrected sooner.

My husband became bedridden a month after his 50th birthday.  He had gotten a decubitus ulcer (bed sore) on his back side after sitting on the wrong wheelchair cushion for too long.  We had spent the weekend attending his middle son's wedding, and he was not able to transfer well from his chair to the bed.   He had no other problems, no medical diseases such as high blood pressure or breathing problems or dementia.  He was just paralyzed.  We tried for months to get his worker's compensation insurance company to provide a lift to transfer him from the bed to his chair, but they refused.  After 8 months of lying in the bed I should have been alerted to the bugs my husband kept insisting he saw on the walls and ceiling.  Well...he was a big jokester, loved playing pranks on people, so I just put it off to him trying to trick me.  I also knew that the house was free from any kind of bugs, so I wasn't concerned about that, however every time he would point out a "bug" to me, I would just tell him it was just a spot on the wall, or a speck of dust.  He never believed me, so I would bring other people in there to confirm to him there were no bugs in the room.   I should have been alerted to the fact that there was a change in his mental status.   It wasn't long after the sightings of the bugs, that he developed a fever, became difficult to awaken and had to be rushed to the emergency room.  He was diagnosed with a very bad kidney infection, which affected his blood, making him septic, and he was also diagnosed with pneumonia.   I noted this in his chart, so the next time he saw bugs, I was able to get help faster and he was only hospitalized for a week instead of for a month like the previous time.  However the looks I got from the hospital staff were a bit amusing when the reason for bringing him to the hospital was because he saw bugs!

Other things you need to write about in your notes are new medications.  When a doctor writes a new medication, you need to write the date, what the medication is, who prescribed it, what it is for, and how it is working, or if there are any adverse effects.  The pharmacy will give you a list of side effects for your medication, so you can be alert for any of those particular signs as well as differences that aren't on the list.

When writing notes, as I said, you don't need to make an entry every day, however when you do make entries, it is very important to mark the date and time of the entry for future reference, or if some lawyer wants to know.  When a change in condition does occur, be sure to document it.  An example would be something like:


4/18/11 8:00 am.  Skin hot to touch, temp 101, 2 Tylenol given, cool wash clothes placed on forehead.
10:00 temp 101, doctor notified.  Instructed to give plenty of fluids and check again in 2 hours.  Water given and continue placing cool clothes on forehead.

12:00 temp 98.6

Writing this information down will not only keep a record of the problem, but will also help establish a record in case it should happen again.  This helps to recognize a pattern and possibly detect a reason why it continues to occur.

You don’t have to be technical in your wording, but whenever you notice a problem, keep a record of what you do to fix the problem.  Bowel movements are another problem, not only with bedridden people but with all elderly folks.  It is very important to recognize if there has not been a bowel movement in a day or two.  You don't want to have an impaction develop.  That is not an ordeal you would want anyone to go through!  Keep a record of what measures you use, such as provide laxatives, suppositories or enema's, and what the result was, such as no bm seen or bm noted.

Writing notes is a very individual process.  Just like writing a letter or entries in a journal or diary.  The important thing is to keep a record.  If you notice a regular occurrence such as frequent increasing temperatures, or frequent patterns of constipation, you can alert the doctor and new solutions can be tried to prevent them from happening.


Medical Chart Notes (joke)
 1. Patient has two teenage children, but no other abnormalities.
 2. Patient has chest pain if she lies on her left side for over a year.
 3. On the second day, the knee was better, and then on the third day it disappeared.
 4. The patient is tearful and crying constantly. She also appears to be depressed.
 5. The patient has been depressed since she began seeing me in 1993.
 6. Discharge status: Alive, but without my permission.
 7. Healthy-appearing decrepit 69-year old male, mentally alert but forgetful.
 8. The patient refused autopsy.
 9. The patient has no previous history of suicides.
 10. Patient has left white blood cells at another hospital.
 11. Patient's medical history has been remarkably insignificant with only a 40-pound weight gain in the last three days.
 12. Patient had waffles for breakfast and anorexia for lunch.
 13. Between you and me, we ought to be able to get this lady pregnant.
 14. She is numb from her toes down.
 15. While in ER, she was examined, x-rated and sent home.
  16. The skin was moist and dry.
 17. Occasional, constant, infrequent headaches.
 18. Patient was alert and unresponsive.
 19. She stated that she had been constipated for most of her life until she got a divorce.
 20. Rectal examination revealed a normal-size thyroid.
 21. I saw your patient today, who is still under our car for physical therapy.
 22. The lab test indicated abnormal lover function.
23. The patient was to have a bowel resection. However, he took a job as a stockbroker instead.
 24. Skin: somewhat pale but present.
 25. The pelvic exam will be done later on the floor.
 26. Patient was seen in consultation by Dr. ____, who felt we should sit on the abdomen and I agree.
 27. Large brown stool ambulating in the hall.
 28. She has no rigors or shaking chills, but her husband states she was hot in bed last night.
 29. Patient was found in bed with her power mower

Monday, June 13, 2011

Caregiving from a Caregivers Perspective - Part Two

Part Two - Giving Care 24/7


My last article on care giving was about listening. 

Who listens to the caregiver? 

Where do they go for support, advice, to vent? 

There are many different types of caregivers.  Probably the first introduction you receive in care giving is connected with a grandparent.  You see your parent take care of their aging parents, either by prolong visits, hospital stays with them, or even having them move in with you.  As you get older, you begin your family.  You begin to care for your spouse.  You take care of them in times of sickness, and wellness.  Cooking, cleaning, even the occasional back or foot rub are all parts of giving care. 

As your family expands, and a baby arrives, the role of the caregiver is more advanced, complicated.  You become responsible for another human life.  In the beginning taking care of a child is a demanding 24/7 activity.  You have to feed, clean, nurture a newborn.  However, taking care of a newborn is not a continuous event.  The newborn grows and becomes independent, turns into a teenager and drives you crazy.  Even though you continue to feed, clean and nurture them until they go to college, and beyond.  They are able to function independently. 

The next form of care giving is usually your parent.  This could be limited, or complicated depending on their health issues.  Then there is the area that I am familiar with, the care of a spouse. 

I married my husband 16 years ago.  The first few months were wonderful; however 5 months after we married he was injured in a work related incident which ruptured several discs in his spine which eventually lead to paralysis from his chest down.  He was no longer able to work, and was home alone while I worked.  Since I worked nights, it was not a problem, however when my work schedule changed to days, it was becoming unsafe to leave him.  He would have falls, injure his legs, and get burns from hot liquid spills.  My husband was 37 years old at the time and very independent. 

So, I had a decision to make.  I could continue working, or stay home and take care of my husband.  Even though it meant the loss of my income, the choice was simple.  We were aware that his condition would deteriorate; surgery was not an option his injury was so severe that it couldn't be repaired.  As nurse, I knew how to care of his medical needs, and as a wife I wanted to take care of him.  He was a very private person, and didn't want strangers seeing him in the buff.  The thought made him anxious, so I had no problem alleviating his fears and providing all of his care.  Thus began my 24/7 life of care giving.   In the beginning it was not difficult.  He was able to move about in his wheelchair, and able to drive his van using hand controls. 

Living and a small tourist town, there were not many handicap accessible places we could go, but we made the best of it.  The main thing we missed was contact with the outside world.  Neither of us grew up in this town, so the friends we had were either work related, or church related.  Because of the legal matters surrounding his injury, his co-workers were not allowed to talk to him anymore, and I had lost contact with fellow co-workers due to hospital lay-offs and downsizing.   We were no longer able to go to church because it was also inaccessible.  Thus began our life of isolation.

Having a family member who is handicapped or disabled is a very isolating experience.  Both my husband and I were both friendly, outgoing people, however when you are prevented from going into a friend's, neighbor's or even family's home, you can't visit.  When you can't get into restaurants, or stores or theaters, you stop going out.  Some of life's ordinary things people take for granted are more noticeable when you no longer have them.  When you lose sight, become deaf, or become paralyzed it is a very difficult thing to deal with.  Friends abandon you, family sometimes ignore you, not that they are to blame.  People may get uncomfortable, not know what to talk about, and have their own activities they are involved with.

Eleven years after his injury, my husband became bedridden.  This was traumatic for both of us.  Our bedroom had no windows, so he was unable to look outside, get fresh air, and watch it rain or see the seasons change.  He was not even aware if it was day or night, and had to be constantly oriented to day and time.  Once my husband called my father at 2:30 am to say, " Hi! whatcha doin?"  My dad just said "well, I was sleeping!"  The next day he threatens to come over and knock a hole in the wall so he could see outside!

When he became bedridden his needs changed drastically.  It was like taking care of a newborn, only he was 49 years old, and weighed a lot more!  He had to be turned every 2 hours to prevent decubitus ulcers from forming. His medications were given 4 times a day, he had to have his meals and liquids provided several times a day, and had to have baths and bed changes frequently, especially if a drink was spilled.  His urine bag needed routine emptying, and bowel routines to perform.  Since we shared a bed when he was turned on his left side (every 2 hours), I had to get up so his catheter could drain.  I could no longer leave the house for longer than 2 hours at a time.  I couldn't go out for fun activities for feelings of guilt.   I could not enjoy myself knowing that my husband was stuck in a bed, and he would like to go out and have fun.  I did leave to get groceries and medications, but made sure he had the phone within reach in case a problem came up.  I would try to run these errands while he was asleep to limit any problems. 

Now...this is the part where I'm supposed to tell you where to get help.  Well...Knowing and telling you what to do is much easier than actually doing it.  Each situation is different.  As I said, I'm a nurse, so I knew how to take care of my husband.  He was a private person, and didn't want anyone else to see him.  I was also his wife, so I loved him and wanted to do all I could do to take care of him and make him comfortable.  I had the cards stacked against me.  Most families in this situation are 1.  Not medically adept and 2. Spouse has no problem with anyone providing care, and can afford it.   So, the suggestions in these situations would be to:
  • Hire someone to come in a few days a week to perform routine care;
  • Enlist family members to sit with them;
  • Take some time off, go to a movie or out to eat;
  • Get a massage or manicure, get your hair done;
  • Go to church or join a club;
  • Walk around your neighborhood;
  • Find a hobby; and
  • Join a support group.

It’s always easy to tell someone what to do.  For me, these suggestions were useless.  Most of the time I was either in the same room or adjacent room at all times.  Not only did I take care of his physical needs, but emotional needs as well.  My husband was isolated from everything and everyone, in a room with no windows!  I was his main source of communication.  I would constantly encourage him to call family members just to chat, which he enjoyed, but I could sense conversations were strained.  After months and years of being trapped in a bed, there wasn't much for him to talk about.  As for my escape...well I would go sit on the porch, leaving the door open so I could hear him. I would spend lots of time online playing games and talking with my online friends.  I would sleep when I could, and take care of my husband the best that I could.

Each situation is different.  You have to find out what works for you and your family member.  The main goal is to provide optimum health for everyone concerned.

Part three will be published tomorrow.

Sunday, June 12, 2011

Caregiving from a Caregivers Perspective - Again

In April, Diane began sharing with KISBYTO readers her story as a caregiver for her husband David.  We are going to repost the first few parts and the remaining pieces to this story over the next couple of days. We will also provide this a little later in one report in pdf form.

A wife, mother, nurse, friend, daughter whose life is turned upside down a few months after her marriage and becomes her husband caregiver for the next fifteen years until his tragic death in November 2010.

Introduction

Diane Forrest received her license in nursing in 1993 at the age of 30.  She began her nursing career as a single mother working in the orthopedic department in a local 180 bed hospital.  After a few years she started working part time with a home health agency in addition with her hospital duties. She married in July, 1995 to a wonderful man.  Tragedy struck in December that year when he was injured at work the week before Christmas.  He ruptured 3 thoracic discs that immediately caused numbness in his "saddle" area and would eventually leave him paralyzed from the chest down.  As his conditioned worsened, Diane had to leave her employment and stay home to take care of her husband.  In 2008, he acquired a decubitus ulcer from sitting on an improper wheelchair cushion.  He was placed on bed rest to allow the sore to heal, and even though the sore healed after 6 weeks, he lost the use of his arms, and was never able leave the bed again.  She remained by his side taking constant care, providing medical attention, ordering supplies, dealing with insurance companies and attorneys, doing the cooking, cleaning, house maintenance, yard work, and mother to their combined 5 sons without the assistance of outside help.  On November 10, 2010, her husband passed away from sepsis, an infection in the blood.  He was 52 years of age.  Diane now is sharing her experiences and expertise to others who face similar challenges in their care giving roles.  She welcomes any questions and comments and can be reached through this blog.

Part One – Home Caregiver

This is the first installment of a 5 part series of information that I hope will be helpful for family members who are a primary care giver at home.

The task before you is sometimes a very overwhelming one, and at others a very rewarding one.  Your primary goal is to assist your loved one in reaching the optimum level of care you can provide by keeping them healthy, safe and happy for as long as possible.

The first way to start, as with any new situation is to listen.  Listening is a lost art.  If you don't believe this, try going through the drive thru at McDonalds and see if you get what you order.  If you have ever played the game "gossip" you know that a group of people sit in a circle.  One person starts by whispering something in their neighbor's ear.  What one person starts the game saying ends up as something totally different by the time it reaches the last person in the group. 

When you are taking care of a person, it is not only important to listen to what they are telling you, but to HEAR what they are saying.    There are many distractions in the world today.  We are bombarded by all kinds of noises, technology, and information.  It's a wonder we can interpret our own thoughts, much less the needs of another. 

I am a nurse who has had the opportunity for the past 13 years to be the primary caregiver for my disabled husband.  He would always comment about how fortunate he was to have a nurse for his wife, and I of course always agreed with him.  My education and experience allowed me to constantly observe him and become aware when there was the slightest change in his condition. 

When charting in a medical setting, they have a formula called SOAP charting.  S: Subjective; O: Objective; A: Assessment; P:  Plan.  Subjective means what the person tells you.  It is very important that your thoughts and environment is clear of distractions when you communicate with your loved one.  If the TV is playing, or phone ringing, or dog is barking, or kids screaming, you are not focused on what information your family member is giving you.  Set aside a particular time, such as morning medications or breakfast and ask pertinent questions about the health of your family member.  Questions like how did you sleep, how do you feel, any new problems this morning, do you need anything, would you like something are useful to determine any changes in condition.   Follow this routine throughout the day; changes can occur at the drop of a hat. 

Not only do you need to communicate to find about their condition, but also communicate during the day to provide stimulation and prevent loneliness.  During the past 2 and half years, my husband was bedridden.  It was very difficult for him; he was only 50 years of age when he was confined to bed.  There were many frustrating days.  He would want to talk, and I would be busy with my own tasks.  Each of us at one time or another "pretend" to listen while we are focused on another activity.  Experience has taught me when my father is watching his television program, it is best not to speak to him until a commercial comes on.  He will not listen, and on occasion get mad cause he has been distracted during a critical point in his show.  Make sure you set aside blocks of time to just sit and talk and listen.  Also encourage visits with other family members and friends as well.   Being bedridden was a good opportunity for my husband to reconnect over the phone with old friends and family members he hadn't spoken to in years.  He was able to share memories and make new ones, things most of us never seem to find the time for these days.

Listening will also give you information that you will need to share with the doctor.  Not only can your family member alert you to changes they are experiencing, such as difficulty breathing, changes in heart rates, or a new pain or discomfort.  But you can also be alerted to any confusion and disorientation which should also be reported immediately. When my husband started talking about the bugs that were crawling on the wall I knew things were not normal, and after further testing I was able to determine he had acquired a severe kidney infection and called the ambulance to take him to the hospital where he was treated without any major complications.

Your loved one is depending on you for their care and well-being.  Make sure you listen, and hear their needs and concerns.  Proper communication will not only alleviate their concerns, but will give you comfort in the knowledge that you have provided for their needs and provided the best possible care.

Tomorrow we will publish part two again.

Sunday, April 24, 2011

Caregiving from a Caregiver's Perspective - Part Three

Nurse updating chart


One of the main duties of a nurse in a medical facility is charting.  From the minute you meet a patient you begin writing, asking questions, filling out forms.  After about an hour or so you have become well acquainted with the patient, his past medical history, his family's medical history, and current problems. Some people become quite aggravated with this process, others enjoy it.  It is the job of the nurse to make it as painless as possible.

My father recently went to a doctor in a building that houses several doctors’ offices.  He went in, filled out several sheets of paper, giving them every bit of information including his shoe size and favorite color (not really. he just felt that way).  Immediately after he had finished he was sent to a physical therapist in another office a few doors down.  When he entered the office, he was handed another stack of forms to fill out asking the same information.  Well...needless to say my father refused to spend more time answering the same questions and told them to either get a copy from the other Doctor, or he was going home.

HIPPA laws require that nobody has access to your medical records but you and your physician, unless you give permission of course.  The best way to handle a situation like this is simply to interview the patient.  This will put the patient at ease, allow for one to one contact, and depending on penmanship, will allow you to read the information as well.

When I began taking care of my husband, I stopped charting, didn't feel the need.  I mean, it was just him and me, and I was taking care of him every day.  There was nobody to report to.  It was not like there was another shift coming, or doctor's rounds.  But then, my husband had to be deposed for his worker's compensation case.  The lawyer for the company he worked for wanted specific information, such as dates and actions, which I of course couldn't provide.  That day I went to the store, got a notebook and some page separators and started a medical chart on my husband, because I didn't want to be caught with my britches down again.

The first page of my chart was like a front page of a hospital chart.  It listed his Name, Social Security number, address, phone number, insurance information, doctor's name and address, next of kin, known allergies and immunizations.  The next section listed his medications.  It included the name of the drug, strength of the drug, number of times to take it, and since he had multiple doctors, I included who prescribed the drug.  I also had several copies so that each time he was transported to the hospital or doctor; I could simply pull a sheet and have all the information available, especially in emergency situations.

The next section included a list of supplies.  It listed the name of the supply, the company that manufactured it, and the order number.  I added a column to that page later listing the date ordered and received when we were switched to a different provider, and we had problems getting orders in. 

Next was a section on Doctor visits and hospitalizations.  It included the name of the doctor, date, reason for the visit, and outcome of the visit. 

Since my husband was incontinent, and used a catheter, the next section was for input and output.  For this section I printed out a calendar for the month. I would put the total for each day, on the day of the month it occurred.  Now you are probably wondering, how could she possibly remember everything for the whole day to write it on the calendar?  Well...I printed out a weekly calendar and placed it on the refrigerator.  Every time I got a drink, I would simply write it on that day.  At the end of the day, I totaled it all up.  Since my husband's urine was measured in cc's I converted the fluids he drank into cc's as well.  This is not as hard as it sounds.  For my husband, he drank sprites in a can.  I poured them into a large plastic cup with a cap and straw so he wouldn’t dump them in the bed.  1 can drink is 350 cc's (this information is on the can).  I made a chart from 1 to 6 cans, and what the total would be.  That way, I wouldn't have to be doing a lot of adding.  1 cup is 250 cc's, and if you drink something that is bottled it will tell you what the amount is.  Milliliters and cc's are the same thing. I would also put a check mark on the days he had a bowel movement, if there was more than one, I would just put a check mark for each one.  This is good for making sure there is no constipation or impaction.

The last section in my "chart" is for notes.  I will talk more about that next time.  I don’t want to overload you with too much information.  So I will let you digest this and see you again soon.

Thursday, April 21, 2011

Caregiving from a Caregiver's Perspective - Part Two b

Part 2b – Giving Care 24/7

Having a family member who is handicapped or disabled is a very isolating experience.  Both my husband and I were both friendly, outgoing people, however when you are prevented from going into a friend's, neighbor's or even family's home, you can't visit.  When you can't get into restaurants, or stores or theaters, you stop going out.  Some of life's ordinary things people take for granted are more noticeable when you no longer have them.  When you lose sight, become deaf, or become paralyzed it is a very difficult thing to deal with.  Friends abandon you, family sometimes ignore you, not that they are to blame.  People may get uncomfortable, not know what to talk about, and have their own activities they are involved with.

Eleven years after his injury, my husband became bedridden.  This was traumatic for both of us.  Our bedroom had no windows, so he was unable to look outside, get fresh air, and watch it rain or see the seasons change.  He was not even aware if it was day or night, and had to be constantly oriented to day and time.  Once my husband called my father at 2:30 am to say, " Hi! whatcha doin?"  My dad just said "well, I was sleeping!"  The next day he threatens to come over and knock a hole in the wall so he could see outside!

When he became bedridden his needs changed drastically.  It was like taking care of a newborn, only he was 49 years old, and weighed a lot more!  He had to be turned every 2 hours to prevent decubitus ulcers from forming. His medications were given 4 times a day, he had to have his meals and liquids provided several times a day, and had to have baths and bed changes frequently, especially if a drink was spilled.  His urine bag needed routine emptying, and bowel routines to perform.  Since we shared a bed when he was turned on his left side (every 2 hours), I had to get up so his catheter could drain.  I could no longer leave the house for longer than 2 hours at a time.  I couldn't go out for fun activities for feelings of guilt.   I could not enjoy myself knowing that my husband was stuck in a bed, and he would like to go out and have fun.  I did leave to get groceries and medications, but made sure he had the phone within reach in case a problem came up.  I would try to run these errands while he was asleep to limit any problems. 

Now...this is the part where I'm supposed to tell you where to get help.  Well...Knowing and telling you what to do is much easier than actually doing it.  Each situation is different.  As I said, I'm a nurse, so I knew how to take care of my husband.  He was a private person, and didn't want anyone else to see him.  I was also his wife, so I loved him and wanted to do all I could do to take care of him and make him comfortable.  I had the cards stacked against me.  Most families in this situation are: one not medically adept and two spouse has no problem with anyone providing care, and can afford it.   So, the suggestions in these situations would be to:

  1. Hire someone to come in a few days a week to perform routine care.
  2. Enlist family members to sit with them
  3. Take some time off, go to a movie or out to eat.
  4. Get a massage or manicure, get your hair done.
  5. Go to church or join a club.
  6. Walk around your neighborhood.
  7. Find a hobby.
  8. Join a support group.

Its always easy to tell someone what to do.  For me, these suggestions were useless.  Most of the time I was either in the same room or adjacent room at all times.  Not only did I take care of his physical needs, but emotional needs as well.  My husband was isolated from everything and everyone, in a room with no windows!  I was his main source of communication.  I would constantly encourage him to call family members just to chat, which he enjoyed, but I could sense conversations were strained.  After months and years of being trapped in a bed, there wasn't much for him to talk about.  As for my escape...well I would go sit on the porch, leaving the door open so I could hear him. I would spend lots of time online playing games and talking with my online friends.  I would sleep when I could, and take care of my husband the best that I could.

Each situation is different.  You have to find out what works for you and your family member.  The main goal is to provide optimum health for everyone concerned.

Wednesday, April 20, 2011

Caregiving from a Caregiver's Perspective - Part Two a

By Diane Forrest, RN

Giving Care 24/7

My last article on care giving was about listening. 

Who listens to the caregiver? 

Where do they go for support, advice, to vent? 

There are many different types of caregivers.  Probably the first introduction you receive in care giving is connected with a grandparent.  You see your parent take care of their aging parents, either by prolong visits, hospital stays with them, or even having them move in with you.  As you get older, you begin your family.  You begin to care for your spouse.  You take care of them in times of sickness, and wellness.  Cooking, cleaning, even the occasional back or foot rub are all parts of giving care. 

As your family expands, and a baby arrives, the role of the caregiver is more advanced, complicated.  You become responsible for another human life.  In the beginning taking care of a child is a demanding 24/7 activity.  You have to feed, clean, nurture a newborn.  However, taking care of a newborn is not a continuous event.  The newborn grows and becomes independent, turns into a teenager and drives you crazy.  Even though you continue to feed, clean and nurture them until they go to college, and beyond.  They are able to function independently. 

The next form of care giving is usually your parent.  This could be limited, or complicated depending on their health issues.  Then there is the area that I am familiar with, the care of a spouse. 

I married my husband 16 years ago.  The first few months were wonderful; however 5 months after we married he was injured in a work related incident which ruptured several discs in his spine which eventually lead to paralysis from his chest down.  He was no longer able to work, and was home alone while I worked.  Since I worked nights, it was not a problem, however when my work schedule changed to days, it was becoming unsafe to leave him.  He would have falls, injure his legs, and get burns from hot liquid spills.  My husband was 37 years old at the time and very independent. 

So, I had a decision to make.  I could continue working, or stay home and take care of my husband.  Even though it meant the loss of my income, the choice was simple.  We were aware that his condition would deteriorate; surgery was not an option his injury was so severe that it couldn't be repaired.  As nurse, I knew how to care of his medical needs, and as a wife I wanted to take care of him.  He was a very private person, and didn't want strangers seeing him in the buff.  The thought made him anxious, so I had no problem alleviating his fears and providing all of his care.  Thus began my 24/7 life of care giving.   In the beginning it was not difficult.  He was able to move about in his wheelchair, and able to drive his van using hand controls. 

Living and a small tourist town, there were not many handicap accessible places we could go, but we made the best of it.  The main thing we missed was contact with the outside world.  Neither of us grew up in this town, so the friends we had were either work related, or church related.  Because of the legal matters surrounding his injury, his co-workers were not allowed to talk to him any more, and I had lost contact with fellow co-workers due to hospital lay-offs and downsizing.   We were no longer able to go to church because it was also inaccessible.  Thus began our life of isolation.

Happy Birthday Dad!

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