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Wife in Hospice Care (1 Viewer)

Tau837

Footballguy
I was inspired by @Capella 's thread to post this.

I have posted periodically in this forum about my wife's health situation. We got married in 1992, and she has been disabled since 1998, suffering severe chronic pain and other health challenges that got progressively worse over time ever since.

She spent most of September in the hospital due to sepsis and later pneumonia. She was ultimately discharged on 9/30 in hospice care, which was something that was not on our radar when she entered the hospital. Coming home at that point, we didn't know what to expect. Frankly, I didn't really expect that she would live to Christmas.

Thankfully, she seems to be reasonably stable right now. She lives with severe pain at all times, but she has a pain pump giving her pain medication at a level that is probably 3x what she was getting as a severe chronic pain patient for 20+ years before this, thanks to the fact that she is in hospice care. I don't think she could ever come out of hospice care simply because she could not function without that level of pain medication, and she could not get close to that level of pain medication as a non-hospice patient.

I don't know what to expect, but I am thankful for every day we have together now. Needless to say, this is a very stressful situation. I am thankful that I can come here to this forum every day to take my mind off of it. Thanks to all of you for helping with that.

I welcome any advice any of you may have.
 
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Damn, I'm sorry. One of the hardest times of my life was after the lady I loved and lived with passed away. There will be many hard days ahead. Keep the kleenex handy and keep a box in your car. Remember it's ok to live, it's ok to do yalls favorite things without her. Sounds like you are enjoying the time you have left, focus on her while she is here, but still try to make time for yourself. Much love brother!
 
I was inspired by @Capella 's thread to post this.

I have posted periodically in this forum about my wife's health situation. We got married in 1992, and she has been disabled since 1998, suffering severe chronis pain and other health challenges that got progressively worse over time ever since.

She spent most of September in the hospital due to sepsis and later pneumonia. She was ultimately discharged on 9/30 in hospice care, which was something that was not on our radar when she entered the hospital. Coming home at that point, we didn't know what to expect. Frankly, I didn't really expect that she would live to Christmas.

Thankfully, she seems to be reasonably stable right now. She lives with severe pain at all times, but she has a pain pump giving her pain medication at a level that is probably 3x what she was getting as a severe chronic pain patient for 20+ years before this, thanks to the fact that she is in hospice care. I don't think she could ever come out of hospice care simply because she could not function without that level of pain medication, and she could not get close to that level of pain medication as a non-hospice patient.

I don't know what to expect, but I am thankful for every day we have together now. Needless to day, this is a very stressful situation. I am thankful that I can come here to this forum every day to take my mind off of it. Thanks to all of you for helping with that.

I welcome any advice any of you may have.
So sorry to hear this. Sending love your way.

I helped take care of my father the last year before he died, including getting him into hospice care and ultimately arranging his funeral and all the final financial arrangements. The hardest part for me was to ultimately take time to focus on my own feelings and be able to say goodbye the best I could - which didn’t happen right away.

As a caretaker, make sure to take care of yourself too.
 
Sad to hear this.
You are a good man to live with this for over 25 years. A lesser man would have run.
And im sure you would have got advice to do so.

If there are kids involved, it would be much tougher on all fronts.

As Mrs R said, enjoy the moments you have together. Find laughter where you can.
 
i can't imagine all the emotions you and your family nust be having. Truly sorry and will be praying for you all.

I would recommend that you try to create a memory journal or something like that with her so that you and her loved ones will always have those memories.
 
I was inspired by @Capella 's thread to post this.

I have posted periodically in this forum about my wife's health situation. We got married in 1992, and she has been disabled since 1998, suffering severe chronic pain and other health challenges that got progressively worse over time ever since.

She spent most of September in the hospital due to sepsis and later pneumonia. She was ultimately discharged on 9/30 in hospice care, which was something that was not on our radar when she entered the hospital. Coming home at that point, we didn't know what to expect. Frankly, I didn't really expect that she would live to Christmas.

Thankfully, she seems to be reasonably stable right now. She lives with severe pain at all times, but she has a pain pump giving her pain medication at a level that is probably 3x what she was getting as a severe chronic pain patient for 20+ years before this, thanks to the fact that she is in hospice care. I don't think she could ever come out of hospice care simply because she could not function without that level of pain medication, and she could not get close to that level of pain medication as a non-hospice patient.

I don't know what to expect, but I am thankful for every day we have together now. Needless to day, this is a very stressful situation. I am thankful that I can come here to this forum every day to take my mind off of it. Thanks to all of you for helping with that.

I welcome any advice any of you may have.
I've seen you periodically post about this over the years. You're a good guy, my friend - even if you are a State fan :lol: Keep doing what you think are the right things.

I miss the old ACC hoops threads.
 
I was inspired by @Capella 's thread to post this.

I have posted periodically in this forum about my wife's health situation. We got married in 1992, and she has been disabled since 1998, suffering severe chronic pain and other health challenges that got progressively worse over time ever since.

She spent most of September in the hospital due to sepsis and later pneumonia. She was ultimately discharged on 9/30 in hospice care, which was something that was not on our radar when she entered the hospital. Coming home at that point, we didn't know what to expect. Frankly, I didn't really expect that she would live to Christmas.

Thankfully, she seems to be reasonably stable right now. She lives with severe pain at all times, but she has a pain pump giving her pain medication at a level that is probably 3x what she was getting as a severe chronic pain patient for 20+ years before this, thanks to the fact that she is in hospice care. I don't think she could ever come out of hospice care simply because she could not function without that level of pain medication, and she could not get close to that level of pain medication as a non-hospice patient.

I don't know what to expect, but I am thankful for every day we have together now. Needless to day, this is a very stressful situation. I am thankful that I can come here to this forum every day to take my mind off of it. Thanks to all of you for helping with that.

I welcome any advice any of you may have.

Nothing that helps, but mad 🫡 brother man.

I work in a chemotherapy ward of an oncology department. I cannot tell you how much genuine love I have for the supportive spouses who are there everyday.

In sickness and in health.

Hugs, brother man.
 
I was inspired by @Capella 's thread to post this.

I have posted periodically in this forum about my wife's health situation. We got married in 1992, and she has been disabled since 1998, suffering severe chronic pain and other health challenges that got progressively worse over time ever since.

She spent most of September in the hospital due to sepsis and later pneumonia. She was ultimately discharged on 9/30 in hospice care, which was something that was not on our radar when she entered the hospital. Coming home at that point, we didn't know what to expect. Frankly, I didn't really expect that she would live to Christmas.

Thankfully, she seems to be reasonably stable right now. She lives with severe pain at all times, but she has a pain pump giving her pain medication at a level that is probably 3x what she was getting as a severe chronic pain patient for 20+ years before this, thanks to the fact that she is in hospice care. I don't think she could ever come out of hospice care simply because she could not function without that level of pain medication, and she could not get close to that level of pain medication as a non-hospice patient.

I don't know what to expect, but I am thankful for every day we have together now. Needless to day, this is a very stressful situation. I am thankful that I can come here to this forum every day to take my mind off of it. Thanks to all of you for helping with that.

I welcome any advice any of you may have.
I'm sorry, GB. Thank you for being there for her and I'm glad she has someone like you.

Praying for peace and grace for y'all. Much love.
 
I'm very sorry to hear this. You should be commended for your love, dedication and support. Praying for you and your family - as others have said, try to enjoy the time together and make sure to lean on others as much as possible.
 
Having gone through cancer with my wife, who thankfully recovered, I can empathize your feelings on this. Life is thrown into real perspective when you go through stuff like this. I enjoy our morning coffee together differently. I value things differently. I hear her voice differently when she speaks to me. Your current journey sounds heartbreaking, but it's not over, so enjoy each moment.
 
While it’s certainly not the path you or she would choose, I’m glad hospice has finally been able to control her pain. I’d lean on them as a resource to understand the process of dying, to prepare for what lies ahead. They cannot predict the future, of course, but can help ease the uncertainty.

But most importantly, continue to maximize your time together. More than anything modern medicine can offer, I’m sure she takes solace in the loving care you provide.
 
Thanks for all of the supportive posts. I really appreciate each one.

I also really appreciate this forum. While I mostly come here to get my mind off real life, there is no other site where I would post something like this. Thanks to all of you and @Joe Bryant for making it such a supportive community.

I know this is my second comment, but I was just getting up when I typed the first one, and I don’t think I did justice to the impact you’ve had on my own views. Watching you struggle over the years with your pleas to get her proper medication has been heart-wrenching and (while I can’t say I came into the issue with a different point of view) completely cemented in my mind that how we deal with pain medication in this country is misguided. We need to address it at the patient level and not have the DEA or industry guiding our decisions.

Having a federal bureaucracy or corporate bureaucracy deciding how we go about this is wrong. It should fundamentally be a patient and his or her doctor that is making these decisions, and with a heavy emphasis on the patient and his or her needs and wishes.

God bless you, Tau, and God bless your wife. I am so sorry to hear this.
 
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I've long admired you for your dedication to and love for your wife during the course of her many years of struggles. I'm so sorry you're going through this. I know you're going to provide her with such love and wonderful memories even while you're in this phase. Sending love and hugs to you both.
 
While it’s certainly not the path you or she would choose, I’m glad hospice has finally been able to control her pain. I’d lean on them as a resource to understand the process of dying, to prepare for what lies ahead. They cannot predict the future, of course, but can help ease the uncertainty.

But most importantly, continue to maximize your time together. More than anything modern medicine can offer, I’m sure she takes solace in the loving care you provide.
Hospice workers are amazing at their job. Definitely use them for anything you can. It’s tough anytime, even more so around the holidays. Cherish any time you have together, also realize that she isn’t suffering under their care.

God Bless
 
Sorry to read that your wife's health has deteriorated Tau. She'd been fortunate to have you as a supporter, advocate, and life partner. I hope you both can find some peace and laughter together.
 
I know I've told you before how much respect I have for you, but I just wanted to say it again. You are so dedicated to your wife, and you are a shining example that unconditional love does exist. You have been such an advocate for her with pain medication and care, and anyone can read in your words how much you adore and love her. I think your loyalty and love have made all her days better. Your wife's struggles are a sad story, but there is also a beautiful love story in her years with you.

Has she heard "You're My Best Friend" or "True Companion" lately? I bet that would bring a smile.

I wish you both peace, comfort, and lots of love.
 
Wow, truly can’t imagine. God bless you. I don’t have any advice to offer but if you ever wish to talk I’m there.
 
Is there anything she always wanted to do that is available to you guys now? A trip or show?
Ooo... good idea. Virtual reality could be your friend here. Go on a cool trip without leaving your home.

Good idea, I will look into virtual reality here. Unfortunately, it is very difficult for her to move out of bed, and she has only done so since the beginning of September for trips to and from the hospital. Thanks for the recommendations.
 
While it’s certainly not the path you or she would choose, I’m glad hospice has finally been able to control her pain. I’d lean on them as a resource to understand the process of dying, to prepare for what lies ahead. They cannot predict the future, of course, but can help ease the uncertainty.

But most importantly, continue to maximize your time together. More than anything modern medicine can offer, I’m sure she takes solace in the loving care you provide.
Hospice workers are amazing at their job. Definitely use them for anything you can. It’s tough anytime, even more so around the holidays. Cherish any time you have together, also realize that she isn’t suffering under their care.

God Bless

You're right, she is getting amazing care from her hospice nurses. She has had a lot of nursing care over the years, including home healthcare. These nurses are the best, and I am very thankful for them.
 
I am so sorry your wife is dealing with so much pain and you are also dealing with this situation.

I myself am disabled and deal with a very rare chronic migraine disorder which leaves me with horrible migraines at least 3 x's per week and that was worse before they got the medication correct. The rare part of my disorder which is called MUMS is occasionally I suffer from Stroke-Like Symptoms to the right side from these migraines which leave me totally debilitated for up to 5 days.

Not only the amazing Nurses that I have been treated by and the Neurologists, but my wife has been a rock for me throughout this whole thing. Please remember that even though this is really tough for you and I am so glad you have a place like this to ease your mind, but you are also your wives rock and she knows that every single day. Deep down she knows you are being as strong as you possible can be and she is extremely proud to have you by her side and in her corner. Remember that at all times.

Stay Strong
 
I am so sorry your wife is dealing with so much pain and you are also dealing with this situation.

I myself am disabled and deal with a very rare chronic migraine disorder which leaves me with horrible migraines at least 3 x's per week and that was worse before they got the medication correct. The rare part of my disorder which is called MUMS is occasionally I suffer from Stroke-Like Symptoms to the right side from these migraines which leave me totally debilitated for up to 5 days.

Not only the amazing Nurses that I have been treated by and the Neurologists, but my wife has been a rock for me throughout this whole thing. Please remember that even though this is really tough for you and I am so glad you have a place like this to ease your mind, but you are also your wives rock and she knows that every single day. Deep down she knows you are being as strong as you possible can be and she is extremely proud to have you by her side and in her corner. Remember that at all times.

Stay Strong

I'm sorry to read about your situation but glad you have your wife and good medical care. Thanks for your post, I appreciate it.
 
I wish I had advice that would help, all I can offer is huge respect.

It sounds like you are a great person. One of my mentors has a wife who has struggled with MS for almost 20 years (started at 55). The last ten she has basically been immobile.

I don’t know if I would have the strength to go through what he has and your situation sounds similar.
 
Is there anything she always wanted to do that is available to you guys now? A trip or show?
Ooo... good idea. Virtual reality could be your friend here. Go on a cool trip without leaving your home.

Good idea, I will look into virtual reality here. Unfortunately, it is very difficult for her to move out of bed, and she has only done so since the beginning of September for trips to and from the hospital. Thanks for the recommendations.
You can do some of this with your TV as far as I can tell. This site looks promising.

Forbes also has an article about VR from home.

Pretty sure there are more.
 
The emotional strain and toll is tremendous when you have to be a caretaker for your loved ones.

I watched my father in-law do it with my mother in-law and then my wife do it with her sister.

God bless you and know in your heart you did everything you could and she loves you dearly for being her soulmate. You have done everything you can. While that does not ease the pain it will allow you to eventually keep moving forward with no regrets, only memories of being a great husband and doing the best you could.
 
Hey man, you're one of the great ones standing by your wife like this. It's an incredibly tough ordeal. I wish you and her all the best.
 
So sorry to hear, good on you for being there for her through this whole thing. My sister has had chronic pain for 30 years, it can be so debilitating and she is now disabled due to it, so I have a tiny little concept for what you must be going through. As others have said, be sure to take care of yourself as well as you can.

L&R
 
I'm so sorry this is happening Tau, I'm sure you are treasuring every moment you have with her at this point
Be there for her and make sure to set aside some time for yourself
I hope you have family to fall back on or some very close friends to help guide you thru this

Sending good vibes your way, some folks call it thoughts and prayers, whatever produces good energy
I can't imagine losing my wife and I've lost many family members to different illnesses and cancers over the years
I have little tears in my eyes just thinking about it. That likely doesn't help you feel better but I wanted you to know we're listening and we feel your pain
 
Thanks for all of the supportive posts. I really appreciate each one.

I also really appreciate this forum. While I mostly come here to get my mind off real life, there is no other site where I would post something like this. Thanks to all of you and @Joe Bryant for making it such a supportive community.
I'm not a huge poster (other than getting interested in an occassional topic) and have no good advice, but wanted to add I'm sorry to read about this and how much I respect your committment to your wife. It sounds like you've done everything you can and I hope things go as well and peacefully as they can for you and your family moving forward.
 

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