The Challenges Of Being The Patient or The Care Giver
Do you ever have so much going on in your mind that you find it impossible to write about? That's where I've been lately, so many life events that I find hard to put into words. I think I will start from the present first, and possibly go back in time with another buzz in order to fill in the blanks, maybe.
My husband was diagnosed with a rare condition years ago which has led to other medical issues. He was also diagnosed with three (not one) lung conditions which there is no cure for, only treatment(s) to try and reduce symptoms along with progression.
My husband has a team of Doctors at the University of Pittsburgh Medical Center which we visit more often than he'd like at times. The great thing about setting up your loved one with a team of Doctors from the same Hospital is the fact that they interact with each other, are able to pull up your test results because they use the same system, in our case UPMC, and they stay in contact with each other; this benefits the patient because each doctor deals with a 'piece' of you when you have multiple issues they can pull those pieces of the puzzle together as a team.
Years ago my husband was diagnosed with Sarcoidosis, a disease that can go into remission or progress, he was diagnosed in 1987, I remember this year well because I was pregnant with our second child. The doctors told me before they got a final diagnosis that they were 99% sure he had Lymphoma. I was scared shitless. I had a nagging fear until the biopsy report came back that I could lose my husband to cancer before our second child was born. I had fear for what he was going to face and how I would deal with it emotionally. I had to be strong, even though I felt like I was dying on the inside. It took two months for the biopsy to come back, it wasn't cancer, it was Sarcoidosis.
Sarcoidosis, a chronic disease of unknown cause characterized by the enlargement of lymph nodes in many parts of the body and the widespread appearance of granulomas derived from the reticuloendothelial system.In my husbands case, the granulomas have grown and enlarged within his lungs (the most common progression). He was told years ago it went into remission and from that point on, he was treated for "Asthma," not sarcoid. He had asthma as a child so we honestly believed that it did return as a young adult.
His sarcoidosis was found on a routine Chest X-ray and he had no symptoms. It wasn't until later in life that his symptoms became a major issue and the Doctors were still treating it as "Asthma."
Fast forward- In 2011 I pushed for more testing because I saw him slowly declining. Always follow your gut, it's usually right and even if it isn't when it comes to a persons physical health, nothing lost if you're wrong. I'm glad I pushed for more testing because we found out there were other issues, and after a lot sleepless nights for both of us, we began to get answers.
In 2016 my husband's breathing was getting worse and he was sent to another specialist on the team at UPMC, the Doctor put him on an anti-rejection drug which also suppresses the immune system. Suppression of the immune system is supposed to suppress the growth of more granulomas inside the lungs along with scarring, also referred to as Pulmonary Fibrosis which they can't reverse either. Fibrosis spreads, so once again, immnosuppressant drugs can help to slow the growth of fibrosis down. The down side of immunosuppresants is that they can lower your immune system to the point that you can pick up bacteria that a normal, healthy individual can fight off.
He's had pneumonia 2 times since May of 2017. He's now off of his immunosuppressants and we will find out what the Specialist has in mind next week. My husband is tough and it takes a lot to keep him down, this last bought of pneumonia kept him in bed for almost 2 weeks. We ended up on the Emergency Room last weekend because he was he wasn't able to breathe. He had a fever and was delirious. I woke him up in the morning because he was gurgling and rattling as he slept. I told him we have to go to the ER. He kept putting his hands up in the air and saying, "I'm getting out of bed," I thought I was going to have to call an ambulance. Luckily, he finally aroused more and was able to get up for me.
As far as the infection goes, he appears better. His breathing, not so good. I'm hoping that this hasn't caused more damage. I can't tell him any of this because it would be cruel and unnecessary. I can tell by the look on his face that he has a lot of fearful thoughts running through his mind. I try to focus on the positive which seems to help him, even if it's momentary, just have a lot of momentary minutes with your loved one through out the day when they are living in fear of the unknown. Pamper them no matter how tired you may become. Pamper yourself when you can, no one else is going to do it for you. I find just listening to music, cooking, or chatting with a good friend can help me to stay centered, it's hard to stay centered but it's vital you do for your loved one's sake.
If you find yourself in a similar situation now or in the future, remember to do your homework too. It's important to understand the illness, the treatments and the medications your loved one is on. Keep all the Doctors numbers close at hand in case you need to get a hold of them. Don't be afraid to call the Doctor on behalf of your loved one either, because there may be times you are stumped, worried, not sure if you need to run to ER or the Doctor's office. Good Doctors will guide you and really DO care! Remember, no question is stupid. When they are ill, they are going to get moody, don't take it personal. It's okay to cry, if you don't allow yourself to shed your own emotions you may end up blowing on the wrong person or your loved one. It's also OKAY to question the doctor if you feel they aren't doing all they should or you're just stumped.
Don't isolate yourself by becoming so immersed in the illness of your loved one that you forget to reach out to others. It does take energy to reach out and many people, myself included feel like people may think we are whining if we reach out. Remember, if you don't reach out, people can't read your mind which will make you feel isolated, it's amazing when you are able to open up, you will find there are people who will put everything aside and be there for you and your loved one!
I have been isolating myself from everyone over the months, not intentionally but it hit me today that I've felt so alone. This is not healthy when you are the caregiver, we all need a little help.
One last note that just came to mind- when a person has chronic breathing problems or develops an illness that affects their breathing more, they may be put on high dose steroids. When someone is on a high dose of steroids they get 'roid' rage as I call it. Actually, I think I've heard others use the same term. They are hard to reason with and easy to upset. I'm not sure I have an answer for this one other than, learn to not take it personal and if you need to, walk away until you calm down. It's extremely stressful watching someone you love struggle and just as stressful when they lash out at you for no reason at all. They don't mean to lash out, they are not in control. When my husband came down from his steroids, he thanked me for taking such good care of him. My answer, "you never have to thank me, that's what love is all about, and you'd do the same for me if the table was turned."
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Comments
Lisa Gallagher
6 years ago #31
Lisa Gallagher
6 years ago #30
Hi Ken Boddie, I will take you up on your wishes! When I busy at home or where ever I may be for the most part, my dreams and what I do hold on to the most is optimism. Without optimism, it would be hard to get up each day and he sure needs a bucket full of that too :)) Thanks Ken, very appreciated!!
Ken Boddie
6 years ago #29
Lisa Gallagher
6 years ago #28
Lupita \ud83d\udc1d Reyes, you are such a gem, I felt the hug and I will hang on to that w/hope, nothing is impossible, right? Thanks so much and Big Hug back!
Lisa Gallagher
6 years ago #27
Thanks , now that his pneumonia is not acute he's an easy patient. Actually, he's been working from the home office off and on, keeps his mind busy. His strength amazes me. Many times my burn out comes from worry when I'm not busy doing something. As long as I can stay busy my mind isn't over thinking things. Hoping he gains some 'lung power' back too. I can't imagine what you went through when you took care of your dad. I can only relate in the sense of my mom and all of our circumstances differ. I agree, time for ourselves is important. I almost feel guilty though taking time because he's not able to enjoy things or even do things he used to love to do. Praying, the new specialist we see on Monday will have some more answers that are positive!!
Lupita 🐝 Reyes
6 years ago #26
David B. Grinberg
6 years ago #25
Lisa Gallagher
6 years ago #24
Thanks Paul \, drawing strength from each other is so necessary. Oh I gave him a big wet kiss and he said, "What was that?" I told him it was from YOU LMBO! Oh yea, I saw the call for action and stole it immediately. Well borrowed, since you politely and kindly posted it. Lead, really?? Wow!
Lisa Gallagher
6 years ago #23
Thank you so much Debasish Majumder, you are appreciated!!
Lisa Gallagher
6 years ago #22
I think I can thank my mom (or should I say, it feels good to thank her?) for who I am today. Thanks Jim Cody \ud83d\udc1d Brand Ambassador, when I see someone struggling, all I can do is think, "what if that were me?" That thought leads me to action. :)
Lisa Gallagher
6 years ago #21
Thank you so much Franci\ud83d\udc1dEugenia Hoffman, beBee Brand Ambassador! I'm holding on to hope since he will see a new specialist on Monday :))
Lisa Gallagher
6 years ago #20
Cyndi wilkins it sounds like your plate is over flowing. Stress sure can kill you, who's helping YOU right now? You are such a giver by nature and it's my hope that someone is lending a hand. We all need our space and time to re-energize. Sending good thoughts to you!
Cyndi wilkins
6 years ago #19
Challenging to say the least...Another 'care taking' situation...right on the heels of losing my father last Christmas we have another family member in need of care. Fortunately, she's not quite as debilitated as my dad was...However, that being said, it's only a matter of time. These things can go on for years... This is a difficult time of life...that sandwich generation when you are raising children and caring for elderly parents...The stress alone can kill you, so you really have to take good care of yourself too...Not easy to do when juggling all that AND a career...Something's got to give...I just hope it's not my own sanity;-) So hang in there Lisa \ud83d\udc1d Gallagher...You've got plenty of company...and support...especially from those of us in the trenches with you!
Lisa Gallagher
6 years ago #18
Very inspiring words , I will hold those words close to my heart! Inspiration means a lot. Thank you :)
Lisa Gallagher
6 years ago #17
Thank You!!
Lisa Gallagher
6 years ago #16
Thank you so much for your words of compassion Joyce \ud83d\udc1d Bowen Brand Ambassador @ beBee. I had a few days when he was on the high doses of steroids (I should say moments w/in those few days) my mind did wander and thought, I wish I could run away... just a fleeting thought and I would never do that. When he thanked me for doing so much for him, I thanked him back because he doesn't realize how much he has done for me and our family as well. He's been a work-aholic/Type A personality for as long as I've known him and I think that in part, keeps him going even when he feels he can't.
Lisa Gallagher
6 years ago #15
It can be very exhausting Cyndi wilkins, you're so right. "Don't kill the care giver." LOL, those thoughts come to mind at times. I remember how angry mom would get at times. It wasn't often but oh boy when she was, you wanted to run, even though no one did :)) We had to make light of it. My husband is functioning right now, so for the time being I'm getting a break until evening arrives. He seems to get worse at night for some reason. I'm glad you and Deb met! How are things going on your end now?
Debasish Majumder
6 years ago #14
Lisa Gallagher
6 years ago #13
Hi Laura Donnelly, I'm very sorry for the loss of you mom. It's hard to watch someone with COPD because the illness can last for sometime as they struggle before it over takes them. Kudos to you and your brother for being there for her, never an easy task. There are many emotions people go through when they are taking care of a loved one... worry, extreme fear, yes anger (or frustration), sadness and many days, numb because you're just going through the motions per se. I think the numb part is protective in many ways, it helps people to manage through each day. Thank you for sharing your story. How long has it been since you lost your mom?
Lisa Gallagher
6 years ago #12
Hi Tausif Mundrawala, bittersweet memories you shared! You are the example of the most loving care taker. Your mom knew how loved she was and I'm sure felt so happy that she was being taken care of by her loving son. I hope you are eating better now. You were so gentle with her and made sure all of her emotional and physical needs were met. I understand how you must have worried about her going to the latrine on her own, my mom did the same and sadly, one night she did fall and break her upper arm, that's when she became bedridden. Thank you for sharing what came to mind Tausif and best to you!!
Lisa Gallagher
6 years ago #11
haha, I think that's the first time I've heard the term "schlapplakking" !
Mohammed Abdul Jawad
6 years ago #10
Joyce 🐝 Bowen Brand Ambassador @ beBee
6 years ago #9
Joyce 🐝 Bowen Brand Ambassador @ beBee
6 years ago #8
Cyndi wilkins
6 years ago #7
Lisa Vanderburg
6 years ago #6
Yes; you're right Lisa \ud83d\udc1d Gallagher; to bear intimate witness to another's suffering is way worse for the helplessness we feel. But you are doing everything you can for him and knowing fully what will or could come is often brutal, but necessary. And I think to go a little crazy is a GOOD thing; me and Pete will have moments of sublime and ridiculous schlapplakking with our acerbic exchanges...get it while it's hot :)
Lisa Gallagher
6 years ago #5
Lisa Vanderburg, sadly, you sure do understand. Its strange, I think we feel more heartache for others than ourselves many times. Thats probably because we can relate and when its part of your life, we either gain a sense of acceptance or go crazy. I will gladly take acceptence. I will admit, there are times I feel so afraid and angry for him. Thanks for commenting!
Lisa Gallagher
6 years ago #4
Hi Ella. Im sorry to hear your sister has sarcoidosis too! Did they stage her? Im assuming her sarcoidosis never went into remission? You are only the second person Ive heard from that has a family member with it. Where does she go for treatment and follow up? How wonderful that she has such a large and caring family. So cool to hear shes written books with another to come, very therapeutic too ;) This is a very challenging disease and I had no idea until recently thst it can spread to other organs. They think his has spread minimally to the spllen too. Send your sister very good wishes from me please! Are her books on Amazon?
Lisa Vanderburg
6 years ago #3
Lisa Gallagher
6 years ago #2
Hi Pascal Derrien, I would call myself a part time care giver, even though its been fairly full time the past 3-4 weeks. Because of his drive, he still manages to work with the exception of about 8 days. He amazes me! I hear people can become certified care givers even for family members within the USA, Im not sure what it entails. I do know the get paid. Many people dont utilize the option if they receive help from home health, hospice or other. There are people who do get paid to take care of very ill family members who would otherwise be in a nursing home. Thanks for your kind comment!
Pascal Derrien
6 years ago #1