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I understand the value of Three Little Words... Who’s your supervisor?

Fearless Caregiver Manifesto
Principle Two

I will fearlessly make my voice be heard with regard to my loved ones care and be a strong ally to those professional caregivers committed to caring for my loved one and a fearless shield against those not committed to caring for my loved one.

Question/Topic for June 2013

I understand the value of Three Little Words... Who’s your supervisor?
Share your experience dealing with the health care system and your loved ones

Shared by: Aaron

To: Tears In Canyon Lake
From: Aaron in Denver
All that I have power over, as I provide the daily care for my aged Mother, is my attitude and outlook. Mom's needs are 24-hours a day, every day. This is a challenge to me, but I do not choose to view it as a burden. I choose to view this opportunity to be of great service to her, as a blessing. I am neither a saint (tzaddik, in my case), nor a miracle-worker. I am just a son who is the only family member able and available to live with, and care for, Mom. What a blessing this is. I get to give back, and I am receiving more than I can tally. And I, too, am experiencing the matter of many friends and family members that have disappeared during this storm. So it goes, man. I am working to use each day in a productive way, so that a year from now I do not look back and wish that I had not wasted this time, particularly while Mom is sleeping. And she sleeps a lot. So, I make sure to use my time wisely. Life is one long Serenity Prayer. And as a caregiver, particularly to a family member that relies upon us, we get to be involved in one-way giving. And that is the highese lever of giving that we are granted. Thank you, G-d. Cheer up, mate. Reach out to others for fellowship and friendship. Call your rabbi or priest or minister. Don't have one? Get one. It may just be that your friends don't know of your intense need. Tell them. You will be allowing someone else to do a mitzvah (good deed).

Shared from: Canyon Lake

I am a caregiver in Canyon Lake. I care for my brother. I feel like I'm going crazy. I feel so alone and lonely. People in the family want my brother cared for at my home but, they are no where to be found. I am sad and alone always. The only thing I do is care for my brother who has terminal cancer. He has reached a point of sleeping a lot. I am here to give him meds , make sure he eats, wash, clean house and I don't have a life. Depression has set in to the max...
Tears In Canyon Lake

Shared by: Rene Cantwell
Dumont NJ

After an accumulated 30+ years as a caregiver, I have a few stories to tell. However, I must say that your point about documenting is the most important piece of advice you can offer. I had a notebook at all times, but now use a note app on my phone. After that, working the chain of command, unless there is imminent danger, or harm has been done, is essential. As for taking care of an issue yourself, two back surgeries have taught me that our greatest role can be that of becoming the supervisor of our loved one's care. Keep yourself strong, require professionals to do the job they're being paid to do, when they are overworked and understaffed, speak to administrators and hold them accountable. And finally, keep your state's Ombudsman phone number on your speed dial. They are there to help advise you when things don't seem right.

Shared by: Kathleen Boyle
Torrance, CA

I am the sole caregiver for my elderly parents. Mom will be 95 in August; Dad will be 89 in July. The last two years has been a challenge with their health, and even had both of them in the hospital at the same time with pneumonia in January/February 2012.

Last summer, my Dad (88) tripped over a parking curb and broke his upper left arm & shoulder. When he got to the ER he told them he did not want surgery to correct the break. He was making this decision on his prior hospital stay experiences, which, due to various complications, have mostly ended up being a much longer stay than was anticipated. He has had three major hospital stays in the last two years. His main health issues are atrial fibrillation (A-Fib) and pulmonary fibrosis (PF) which makes a hospital stay scary for him because he ends up being so weak. Almost every time I have encountered the healthcare system and healthcare workers while either parent has been in the hospital, the nurses and doctors have been quite easy to work with. With one exception...

When Dad had refused to have surgery for his broken arm/shoulder, the orthopedic surgeon refused to see Dad in the hospital and give him a consultation. It would have been easy for the surgeon to give Dad his options - either have the surgery or lose use of his left arm. By the way, Dad is left-handed. With this surgeon's refusal to see Dad in the hospital, he told Dad that he would have to make an appointment with him about 2 weeks later. Can you imagine an 88 yro having to wait 2 weeks to get his options, and then still end up having to have surgery? I spoke with the ER nurses and doctors in the attempt to get the orthopedist to see Dad, but it was to no avail. That was because Dad had initially refused to have surgery. So, while it was Dad's decision that caused the surgeon to not see him, the surgeon was playing "hard ball" with Dad.

For the moment, I was not "winning" the battle of the strong-willed "players" - my Dad and the surgeon. Fortunately - or unfortunately - just before Dad was to be discharged from the ER, Dad had a seizure which caused the ER doctors to admit Dad into the hospital for further evaluation. To make a long story short(er), Dad ended up in the hospital for 2 weeks. His A-Fib and PF caused him to grow weak. During this time I was Dad's sole healthcare advocate, talking with the nurses and doctors at least several times every day he was there. There were several issues that came up, yet every time I encountered the nurses, they were responsive to the issue or needs of my Dad.

On day 2 of Dad's stay in the hospital I began to work on getting the orthopedic surgeon in to give Dad a consultation and get his broken arm fixed with surgery. I talked to the nurses and doctors every chance I had and they were empathetic as to my concerns for Dad's health. The longer he was in pain the other health issues worsened; so, let's get this going!

I joked with them all about seeing me coming down the hallway and they ran the other way. But, in actuality, they told me that they were very appreciative for family members that were advocates for their family members and for those who visited them. Many patients don't have visitors or anyone in their corner to be an advocate. So, all-in-all, they said that the squeaky wheel gets the oil, so to speak. By the end of the 3rd day there was an orthopedist in my Dad's room giving him the options that the initial orthopedist should have given Dad the first day in the ER. Ironically, the two orthopedists are business partners in the same office. The best thing about all of this is that, as far as I'm concerned, Dad got the better of the two surgeons because of his bedside manner, empathy, care & understanding, and respect for elderly patients and WWII vets. He even told us that he was sorry that his partner had not visited Dad that first day in the ER. How about that?

One last thought here....when a nurse's aide treated Dad badly by making him stand in the bathroom for 5 minutes without a walker anything else to stabilize his weak body while she went and looked for a toilet seat extension, Dad did not want to tell anyone. I was emphatic about saying something and Dad finally consented. (I would have told the nurses even without Dad's consent. He was afraid of retribution from the aide when I wasn't there. Go figure, eh?) When I told the nurses about the situation, they immediately pulled aside the aide and talked to her. Found out later that she was put on a 3-day suspension because of her actions - or lack thereof.

On the whole, nurses and doctors are there for the patient and their care. They are caring and empathetic - but very overworked. Not enough of either in a hospital and they do what they can in a timely manner. When it comes to a patient's timely issue, most nurses will assist immediately. As caregivers and advocates for our family members, we need to step up and insist in most cases that the staff do what they can for our family members. If we do not, who will? Besides, as the nurses and doctors told me many times, they definitely appreciate a family member bringing to their attention any issue or need which arises. They cannot see it all, and appreciate our desire to see our family member's needs met.

Shared by: Pat R

I have taught grand daughter to advocate when I am not there. After kidney transplant with no pain meds as she has no feeling below waist, she had an episode of excruciating pain which meds did not help and her BP was sky high. Resident found no cause and nephrologist on call told him to manage her pain and BP and he would see her in AM. - 12 hours from then. Dad was called down and he discovered her cath was blocked and her augmented bladder was full. Next morning when docs rounded, she wheeled out there in the hall and told doc off in front of the residents to FIND the cause of pain before saying manage it. Despite being told off by a 15 yr old 90 pound kid, he apologized to her. She refused to see him when he was on call - she has a long memory and can hold a grudge when it come s to all her health issues and doctors. I feel better leaving her in hospital now because she has learned to advocate and knows everything about her many medical issues and her meds. She is an equal partner with her docs- just the way it should be.

Shared by: Cathleen B
Okeechobee, FL

My 94 year old Mom had fractured her pelvis last year and needed to be in a rehab facility for a period of time. The Social worker at the hospital kept giving me places that were quite a distance from my home. When I told her we needed a place north of the hospital, she said she didn't know any and that I should go home that night and search for skilled nursing facilities in the counties that were closer to my home. When I questioned her about the fact that I thought she had internet access too, she told me she was too busy. I did go ahead and do the search, found several facilities and gave the names and numbers to the social worker. My Mother is on dialysis and we had to find a place that would accept her and transport her-that was the major stumbling block. One of the facilities that I gave her accepted my Mother. After my Mom was moved, I called the supervisor of Social Services at the hospital and explained what I had to do and what her employee told me. I also told her that I better not see a bill for Social Services to Medicare as well as the Social Worker needed to be informed that there were many patients in her hospital that did not live in the Southern part of the county and she needed to be educated on all facilities that were available in the service area of the hospital. I received a very nice letter from the supervisor, the hospital administrator and never did see a bill. By the way, although my Mother is still not an independent walker she gets around quite well on her walker and still receives dialysis 3 times a week.

Shared by: Julie
Mount Vernon, Washington

My husband, who has post-polio syndrome & is non-ambulatory among other health issues recently visited his family doc with me in tow... The doc could NOT understand WHY he was no longer using his full-leg braces or his crutches and would not address the pain he has been suffering. Suffice it to say that he is no longer our family physician, we have found a new doc who is caring and compassionate... Obviously, even though my husband has been his patient for at least 4 years, he know nothing about post-polio. Shame on him!


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