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Other medical professionals as spousal caregivers?


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Just wondering.

Hard cohort to hunt down.

With all due respect to the wonderful ppl here, it is different to care for your spouse's SCLC and death when you have worked Hospice *as* the nurse.

Those of you who know the physiology, pathology and the medical 'industry'... and grieve with all of that knowledge in your head.

"Just forget you are a nurse"... that doesn't work.

After 20 years as a nurse... once a nurse, always a nurse. It is not something you turn "off". It becomes engrained thinking, and it changes you.

At 15, also helped care for my uncle ("dad" in so many ways) when he was dying with SCLC. He was 63. My husband is 53.

So much between my ears that won't come out into words.

perhaps over time.

thanks.

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Well I am not a nurse but I will welcome you to the wives club here. I read your profile...you have both been put through the ringer. Please feel free to let loose here and say whatever you need too, you're among friends.

Rochelle

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I am a Respiratory Therapist, and was caregiver to my Mom. I know how you feel, sometimes too much knowledge is a bad thing. There were a lot of positives to me being involved in my Mom's care though. I always attended appts with my parents, and asked the questions they never thought to ask. When I noticed Mom was dehydrated, I was able to start IV fluids on her at home (with Doc's approval of course) and save her a trips to the ER. I did a lot of research and spoke with alot of my anesthesia collegues and was able to suggest meds to help with nausea and pain, when the normals weren't cutting it. Use all your knowledge and skills in a positive way, but remember to be the spouse too, not just the nurse!

Oh yeah, welcome to this great community!

Faylene

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Thanks for the repsonses.

Yes, my husband has said time and again how grateful he is that I am a nurse and could relieve some anxiety regarding who was telling him what... That part is automatic and therapeutic.

The line I guess came when I was seeing neuro symptoms that no one else was picking up. I have worked hemotology oncology, HIV, vascular surgery, self employed (Hospice experience), dialysis and then trauma.

Excuse me, but I *do* know my stuff. I know enough to see things changing. Not just marginally... obvious signs the Hospice was missing.

I fired them.

Got a new one and they are great. They have even sent a bereavement counselor to the house for me.

Disenfranchised grief is my 'label' now.. actually researching on it showed that I do relate to much of what is said there:

http://www.indiana.edu/~famlygrf/units/topics.html

I am no longer working as a nurse, I have turned the software hobby into a career.

It's easier to come home at the end of the day, but still I miss making even one person's quality of life better by having been at work as a nurse.

Capitalism ain't for all of us.

Enough for now.

Again, thanks for the kind words.

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rachel and I went to grade school together (starting at age 5), Jr. High, High School......and if that wasn't enough, our parents sent us off to Boarding School together (it took about half of the school year for them to realize that maybe they should have re-thought htat one....)....boy, oh boy do we have stories- great memories- lots of them.....Soon after I moved to Alaska Rachel came out (another story in itself...)- she met her wonderful husband and we live one mile driveway to driveway apart from one another.....I am blessed to have had a best friend for more than 40 years...and now I am a Registered Nurse whose closest friend in the world was dx'd 26 months ago with SCLC-

Although I feel that there is an advantage to being in the medical profession- (all of her docotrs are always willing to talk to me about everything which allows me to ask questions that the lay person might not think of and sometimes I can better explain things to Rachel and her husband butI also feel that it makes the situation quite difficult at times.

Yes, I want to be the one taking care of her when she is in need of it but not as a "nurse"- I want to be her best friend- I want to grieve with her, I want to cry with her, I want to laugh with her-I want to do whatever she needs me to do at the time because she is a huge part of my life! Others forget that although yes,I am a nurse, I am watching my dear friend go in and out of hell-

I think that some feel that it is easier for us "nurses" and other health care givers to deal with these situations because we do it for a living- it isn't- sometimes having the knowledge makes it that much more difficult- how do we go about wearing just one hat- spouse, partner, sibling, friend.....those most important hats.....

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Hello Cellar Door--I am also a nurse--but an orthropaedic surgery nurse. And it is hard to separate the nurse part from the wife part. Esp since we do know too much and I was very frustated watching my husband die in front of my eyes for months. But yet, had to stay strong and tell him he would get stronger--never wanting him to lose hope. And also putting myself in denial--wearing blinders.hang in there and God bless you. You are a saint Nancy C

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Hi,

Just wanted to welcome you here. We are here for support and prayers.

You are a remarkable women who has so much knowledge that you husband is lucky to have you by his side.

I am glad that your husbands pain is coming under control.

Maryanne

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Hi Cellar Door,

I'm sorry to hear about your husband. And I'm sorry you are all having to go through this!

You are one very educated lady, and I'm thinking I can learn a LOT from you! :) With your background this has to be a very difficult situation to be in.

My mom and sister (both passed from LC) were nurses. There is such thing as KNOWING TO MUCH! (sorta kinda)!

I also had a man in my LC Support Group about 5 years ago who was a Professor of Pathology. He too had lung cancer, and I asked him once if he thought that knowing to much was harder then NOT knowing! His answer was, "Yes, it's very hard to know as much as I do about this disease"! I had NO DOUBT that was not an easy journey for him. He was a wonderful dear man.

I hope you will find some comfort & support here for yourself.

My best to you and your husband.

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Thank you all for your heartfelt support.

Comforting to see that I am not alone in this role.

First time in over a month, we went about an nour in the car (90F sans A/C) to see some old friends today at a gathering. Many ppl there have known him for years.

While it was good for him to see his friends and say his goodbyes... I saw the looks on the faces of these persons as he talked to them.

As he has always been a handsome man of impeccable grooming, his appearance to them was in obvious sharp contrast. I cannot imagine what he was thinking as he was talking to them, seeing them with tears in their eyes. As always, he played it with grace and dignity, comforting *them*.

We were gone about 4 hours total and when we got home, I could see his exhaustion. He has been sleeping about 9 hours now. Got the methadone in him so he won't wake up in agony.

~

Today, I played wife using nursing skills to facilitate his getting out into life.

Today I paid witness as a wife, watching his 30lb lighter frame hug others and I could only see a skeleton. I tried very hard not to cry.

Today, I am most proud to be his wife.... and glad to be a nurse.

Tiring, but good day.

~

He reeks of the cancer again.

I am alone here in caring for him.

His family is distant; his only son estranged.

My mother is inconsistent in her support (despite having cared for her husband who died of stomach cancer when she was 27 and he 29) and she lives 4 hours away.

So, when there is precious little other support to be had, I return to the solace of medical knowledge.

He recently told me that he is clinging to life bc he fears how I will be after he dies. He says he fights the pain to make sure I will be OK.

I told him knowing his clinging to life through intolerable pain for that purpose was unnecessary and would ultimately cause me only more grief.

True love is an amazing thing. We are at peace with one another; our deepest feelings and hopes shared. Regrets told, forgiveness given.

After about 3 weeks of little food, more pain, paralysis...

He asked me, "How long can I go on like this?"

In my mind... I automatically start thinking of his vital signs, pulmonary edema, progressive paralysis.... and then I stopped. Ye olde "comprehensive assessment".

While all that professional pathophysiology just kicked in: one truth remained. Each individual's presentation and course of illness will be ultimately unique.

So, I stopped myself from thinking of the science... thought of those whom I had cared for while in Hospice.

I said, "Go home, baby. I will be just fine. You don't have to fight anymore. It's OK, we all know your love for us."

He smiled, cupped my chin with his hand and said "OK, Oprah... I mean, really.... how long can this go on?"

We burst out laughing, really laughing.

Take care all, and thanks so much for reading and responding. You are a courageous group of ppl. The only reason I didn't finish medical school was to remain at the bedside, with the patients. Ppl like you... forthright, inspirational, intrepid and so very resilient.

While I truly regret the reason we have all met here, it doest give me a type of chance to thank all those for whom I have cared. Each of you is a fiber of the being writing these lines.

Off to sleep with my comedic angel.

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I have a nurse friend who I see about once a year. She is first a friend. I forget that she is a nurse until I can spot her quiet gentleness and knowing. She seems to instinctively know my abilities and limitations. She gives me as much independence as I need and then she will do something lovely such as tuck me into bed.

I will be going to Montana to see her again very soon. She gave me an airline ticket for my last birthday...sweet, huh? She worked in hospice for a year and drew many loving experiences from it. She has had many lifelong friends die from cancer. She has enough courage,love, and compassion to crawl into bed with them and spoon with them and pet them as they lay dying. If I could have her on my deathbed, I would be very happy. She is an angel and will shoot up straight to heaven when it is her turn to die.

Your husband's profile reads of pain and tragedy. I am so sorry.

He is very lucky to be loved and treasured by you.

Thank you for sharing this intimacy with us.

Cindi o'h

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I'm a Registered Nurse as well. My mother is my dad's primary caregiver, but it is helpful and difficult at the same time being the nurse in the family. It does have the advantages with the doctors, who are more open to discussing what is going on with my dad. I think that because he does have me living around the corner he was able to avoid a hospital stay with a bout of pneumonia. I love being a nurse, but it takes on a whole new meaning when someone you love dearly is the patient.

Take care,

Cathy

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hopeandstrength: indeed a good point about doctors and asking the right questions. Great time to be a nurse. I too am the only nurse in the family (my mother is the last of 11), but I am always glad to be of help. I have found being objective rather easy in most cases with the family, it's just totally different ground now with my husband.

cindi: Your friend sounds a lot like me (not to flatter myself). I too have curled up with patients, held hands, slept overnight in a patient's room bc he could not sleep without me there (at the hospital).Her buying you that ticket.. it's one of those type of gestures: one from the heart. I hope you have a wonderful time.

Fall54: Thank you very much, but the compliments belong to my mother who has been such a tremendous role model of strength, love and caring. Thank you... she is a hard act to follow up to.

~~~~

Not sure about methadone. He has a mood disorder and this seems to be aggravating a delusional/psychomotor agitation problem that I cannot be awake all the time to prevent him from falling.

He has agreed to take some meds for right now and see if it helps. Has to write now to communicate, but still his reasoning was there and he understood my concerns. Just had to say "if you expect me to give you the best care, that includes being safe. When I am passed out exhausted, I cannot do that." Shook his head, agreed...

Had some fun over the weekend (road trip, first in 3 months) will update how that went tomorrow perhaps.

He is an angel. A sleeping angel, right now.

Hugs to all, and I do feel at home. Glad I posted.

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HiIam also a nurse My 25 year old daughter got diagnosed with adeno carcinoma of the lung just two days after she delivered from ahealthy baby boy .She is going to chemo now and is on her 2 cycle of gemzar and carboplatinum.So far she is tolerating it well without any nausea .Her only complaint is being tired .We are hoping all goes well Iwish all the people on the board the best

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