Being A Caregiver
Hi, my name is Troy Williams and I am a Caregiver. My caregiving story started when my wife Sharon, was diagnosed with the disease Pulmonary Hypertension in January of 2007. Not only did I have to learn about all aspects of the disease but also the vast and varied duties of being a caregiver. What I found out in the months to come was that being a caregiver was not only an enormous responsibility but also carried with it a wide range of emotions. Being Sharon’s primary caregiver I felt that her health and well-being was my first and foremost priority. Even on the days when I may have been tired from working shift work I always made time for her aside from my regular routine because I knew that giving her the emotional support was crucial during her time of need.
Educating myself about Pulmonary Hypertension was a priority for me. Knowing the potential deadliness of the disease and how it devastates its victims by robbing them of even the simplest pleasures in life allowed me to be a better caregiver. Also knowing as much as I could about the disease would help me to help Sharon even more. Learning about all of the medications and the interactions between the different medications was as important for me to know as it was for Sharon and this knowledge was put to the test on more than one occasion during our many hospital stays.
Being a caregiver is not a job that I ever expected to have, I guess sometimes in life we become too complacent and are never really prepared for the curves that life throws at us. I knew from the time that Sharon was diagnosed with Pulmonary Hypertension that this was going to be the most important challenge that I would ever have in my life and it was with that attitude that gave me the drive and determination to make sure that Sharon’s every need was attended too. In the early stages she was still able to do some things for herself and she would make every attempt to due what she could before asking for help, it was her way of fighting the disease and letting it know that she was still in control. I would always try to give her positive reinforcement and on the days that she was feeling bad or just feeling down I would highlight any accomplishments that she had done or talk about what we would do when she got better. In difficult times giving positive reinforcement is almost as vital in the treatment process as the medications themselves.
Sharon was always a very detail oriented person and during our short time together I was able to learn so much from her that would later assist me in helping her. We had to travel about two hundred miles for her to receive treatment and so it was vital to make sure that we had all of the necessary supplies, depending on what treatment she was on at the time, and to ensure that we would not run out of anything, especially medication while we were away from home. This entailed making detailed packing lists (this was one of those tricks that I learned from Sharon) and plotting on the map all of the good rest stops with the nice handicap facilities. Before Sharon got sick I had never thought about the different interpretations of handicap accessible entrances and facilities, believe me there are many. Using a wheelchair allowed Sharon to conserve her energy and although she was resistant to the idea at first, she agreed that it helped her on the many long trips. Before we purchased our own wheelchair also we found out that hotels (at least the ones that we had stayed at) did not have wheelchairs for their guests. We also found that some businesses do not fully understand the limitations of someone using a wheelchair.
Although I wish that I could end this story with news of Sharon’s triumph over the disease that changed our lives forever I am saddened to say that she lost her battle on June 18, 2007 and this is where I made a promise to share her story and to continue the fight to win the war against Pulmonary Hypertension. I told Sharon one time “I will never complain to you again about any problem or pain that I have because nothing that happens to me could compare to what I know that you are going through” and I held onto that promise until the end.
September 9, 2007
Because caregiving can be so overwhelming, it’s important to take steps to refresh yourself. At the very least, this will ensure that your loved one always gets the best you have to offer.
Remember: your needs are important too! Caring for a loved one is an emotional task and caregivers commonly feel sadness, frustration, resentment, anxiety, anger and guilt. As a result of stress, many caregivers suffer from depression and their own physical ailments. It is important that you take time to take care of yourself —even if it is only a few moments here and there.
JUDI’S JOURNEY AS A CAREGIVER FOR A HUSBAND WITH PULMONARY HYPERTENSION:
My name is Judi and my husband Terry has Pulmonary Hypertension. Terry and I were and still are very happy. Both of us and our two boys were in good health. We both worked and made good money. Then one day, BAM, everything changed. He was at a Medical Conference in North Carolina and I got a call at home that he was flying home early because he was sick. I didn’t think much about it, because he always passed his flight physicals. Well, I was wrong. He was in a MediVac Unit in the Army, so I figured with all the doctors he had in his unit, they could surly find out what was wrong with him. When he came home we took him to the hospital and found out that he had Pulmonary Hypertension, among other things. I thought my world had ended. How could I live without him? I didn’t even know how to cut grass or anything.
We took him to Keesler Air Force Base. Keesler is one of the best hospitals in the Air Force. After going back and forth over there and the interns drawing fluid from his lungs, they decided to keep him. After lung surgery, and throwing several PE’s, they discharged him with a diagnosis of Antiphospholipid Antibody. He was in the hospital for 6 weeks and the doctors didn’t expect him to live.
We went home and to make a very long story short, I sort of confiscated his records. Along with all the other 16 discharge diagnosis was Pulmonary Hypertension. It was the very last line on his discharge summary. Neither of us knew what PH was, so I got on the phone and called his Commander and a lot of other doctors in his Unit. Well, we did a lot of research and found the best PH Specialist there is, as far as we’re concerned.
The Military Medically Retired Terry. My boss said something to the effect that I didn’t have my priorities straight. So I showed her what my priorities were and left my job. I didn’t quit my job because I felt like I needed too, I quit because I wanted to. If you read the word “we” a lot in here, it’s because I feel everything that happened to Terry happened to me too.
People often ask me how I can stay with Terry 24/7-----I ask them how they can stay with their husbands all the time. Sure they work and come home at night (most of the time!) and sure they go places on the weekends. Well…so do we. The only difference is, their husbands drink, get drunk and stay out all night with the boys! Terry never did that even before he got sick. My friends quit calling. They were scared Terry was going to die if they were around. . That’s okay. Now I have him all to myself.
I know a lot of people think that its worse on the one who’s sick, but it’s just as bad on the Care Givers too. No, we don’t have all the pain that goes along with PH but we all go through it as Care Givers. Don’t ever think of giving up. They need us to fight for them. Sometimes they get so sick that they don’t want to fight. That’s what happened to Terry. If I gave up and quit fighting for Terry he would be dead now, so no matter how hard it gets on you or even if you think you can’t make it, YOU CAN. You find strength that you didn’t even know you have. If you do give up, then your spouse will. And it’s not a bad thing to cry, I do, a lot.
I never gave up any of my freedom for Terry; I just found a new use for it. We use to play golf a lot and now we don’t. Don’t think of it as having to give it up, find something else the both of you can do together. My life is dedicated to helping Terry and others that have this dreadful disease. Get involved with the doctors. Don’t be afraid to ask questions. Lord knows I ask enough for everyone. I could go on and on about this, but I promised it would be short.
PLEASE don’t think that your life is over because you’re a Care Giver, THANK GOD THAT YOU ARE ONE!
Judi Lindsey June 20, 2008
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Remember that communication is a two-way street. +Figure out what you want to say +Make eye contact. +Get your spouse's undivided attention - are they busy +Use good judgment in timing - is this a good time +Be a good listener - they may have concerns or questions
from Sheila A caregiver’s story about Pulmonary Hypertension
When my husband Rick was diagnosed with PAH it was a shock to both of us. I couldn’t believe that out of all of the things his symptoms could be related to – the symptoms were actually caused by a rare, idiopathic, and incurable disease. Even though you want your loved one to always be healthy; when symptoms start, you’re never quite prepared for it to be something that has been missed and under diagnosed for years.Our lives changed with his diagnosis in October of '08. Because of the amount of oxygen he requires on a continuous flow, it’s not practical for him to drive or travel alone. Therefore, when I pull the car out, he comments that when the "bus" pulls out he wants to be in it to have time away from home. I load tanks in the car and chauffeur wherever we go. This has been a change because he was always our driver.I am in charge of issuing his medications and coordinating appointments. Cleveland Clinic required he lose 40 pounds and I became his dietician. With the amount of medication he takes I also knew I had to make sure his meals were nutritious as well as low in calories, fat, and sodium. I searched the Internet and called his local medical doctor for tips and information. Between those two sources I was able to shop and create meals to satisfy him along with meeting the dietary requirements. He’s lost about 32 of those forty pounds since February of '09. We give each other the credit for his success. I’ve always dealt with areas that cause stress by praying and exercising. I find that some` me’ time is very important in terms of being a better caregiver. I realized that I wouldn’t be any good to either of us if I took `me’ off the list of things to take care of. I have dinner with friends once or twice a month and I exercise most mornings. On the rare occasion that we schedule morning appointments I don’t get out to the gym that day.We make sure he gets some `his’ time with the fellows as well. I taxi him over to have breakfast with his sports and retired buddies. We’ve started date night on Thursdays and thankfully we enjoy each others’ company even when we get on each others’ nerves. Early on I had to let go of feeling guilty about not being as gentle with him as I felt I should. Prayer and exercise lead me to a place where I can cope with the change in our lifestyle. As a married couple, there were things that my husband did that got on my nerves and just because he’s not well right now – I had to learn that I don’t have to feel guilty about those things that still get on my nerves. The most important information I can share is to keep communication very open. Don’t leave anything to assumptions. Don’t assume he knows how you feel or that you know how he’s feeling or what he’s thinking. Without open, honest, and kind communication you’ll never know when you’re on the same page or even reading the same book!
I was sincere in my wedding vows, before God, about in sickness and in health, etc.... and now writing about all of the unconditional support a caregiver should provide for a loved one. So the changes in my life are basically meaningless compared to him suffering, coping, and dealing w/ the disease. It's difficult for me to describe how I've been impacted because it's just life - adjusting and readjusting!
We’ve learned a lot about how to live with the disease by attending CAPH (Cleveland Area Pulmonary Hypertension) support group meetings. The leader of our group, Merle, is a God Send and we are so glad we responded to the flyer and attended our first meeting. The meetings provide us with a peace and support to function within daily activities. They also supply the format for continuous learning to accept and live with the disease.
The best advice I can offer, from a caregiver perspective, is to have a joint commitment to learn as much as possible to provide quality care, take notes and ask questions at all appointments and meetings, be honest and kind, overcome challenges, and love life. June 1, 2009
Schedule time for yourself * Share your feelings * Use community resources * Ask for help * Cut yourself some slack * Eat smart and exercise * Get enough sleep/rest * Attend to your spiritual health Common sense? Maybe. But when you are busy and stressed, it is easy to neglect the basics. Breathe. Deep breathing exercises and meditation can permanently change your physical responses to stress. Practicing 20 minutes a day can make the difference. Exercise. Taking time to exercise can also alleviate stress and help keep you healthy. Set boundaries. Learn to say no. Realizing your own limitations can make you more productive in the long run. Ask for help. Many caregivers think they have to shoulder the burden alone. Enlist the assistance of family members and friends. Plan for respite care. You may need a few days’ break (respite). If friends or family cannot fill in, respite care services may be available in the community. Under certain circumstances, Medicare will pay for a limited amount of respite care. Make time for fun. Do not turn down invitations from friends. If you take time to talk and laugh, it can help keep life in perspective. Be aware of the signs of caregiver burnout. It is time to take a break if you are feeling constantly irritated; ceasing to laugh; snapping at your loved one over little things; having crying fits or rages; or developing stress-related ailments, such as headaches, upset stomach or insomnia. Join support groups. You are not alone in your experiences. Finding out how other people have coped may be helpful. Do not neglect your health. Remember to see your doctor for routine check-ups and recommended screenings. And stay on top of managing any chronic health conditions you may have. % % % % % % % % % % %
This will be for and about CAREGIVERS ~ their thoughts, concerns and suggestions. If you have concerns or advice, please send them to Merle at
Support Group Leader