topic Re: How Do You Stand Watching a Loved One suffer? in Wellness

How Do You Stand Watching a Loved One suffer?

Mindy D — Sun, 26 Jul 2015 21:42:21 GMT

I feel so bad watching my love one suffer in excruciating pain. It has been twenty years of nonstop pain. My poor loved one is finally at the end of his rope in his ability to stand it. I feel so bad inside, but I still have hope for a cure. He is starting to lose hope and writhes in pain, crying and trying to get through it. If I had three wishes, I know what my first one would be.

Re: How Do You Stand Watching a Loved One suffer?

goodstuff — Sun, 26 Jul 2015 22:27:54 GMT

Mindy, I am so sorry you and your loved one are going through this!

I guess my first question is: What is being done about pain management? Does your loved one have good doctors helping him with his condition? Are they aware how much pain he is in? Are they proactive in offering solutions? Is there a pain management specialist involved? There are so many medications and techniques for controlling pain nowadays that I would expect something could be done to lessen the pain, even if it can't be totally controlled!

Blessings and courage to you and the person you are hurting with!

Re: How Do You Stand Watching a Loved One suffer?

jlkz — Sun, 26 Jul 2015 23:55:54 GMT

When my dad was hospitalized (Lewy Body Syndrome), I assumed he was on pain management and asked the nurse could she do something because he'd drift off to sleep but awaken in 2or3 minutes in pain. She told me he was on Tylenol. WHAT !!! I had her get my dad's doctor and get him pain medication.

Later that week, they wanted me to get him hospice care BY PHONE !!! I thanked the hospice representative and asked how in good conscience could I get him hospice by remote when the normal service level had to be watched every minute.

i placed him in Meadowood where he passed away a few days later. I wish I had gotten him there sooner. His pain medication there was closely monitored and quickly adjusted. He seemed to be at peace there and dozed comfortably.

i am sorry for all the physical and mental anguish you and yours are suffering. It's truly debilitating on so many levels. May you all have peace of heart, body, and mind.

Re: How Do You Stand Watching a Loved One suffer?

house_cat — Sun, 26 Jul 2015 23:59:01 GMT

Mindy, if at all possible, get counseling for yourself. You are in a very stressful situation, physically and emotionally.

In my case, I have a son who is bipolar. He is almost always in a state of agitation or depression. It's very difficult to watch him suffer day in and day out. We are doing everything possible to help him, but in the meantime, I see a counselor to save what's left of my sanity. There's no shame in asking for help.

Re: How Do You Stand Watching a Loved One suffer?

Ms X — Mon, 27 Jul 2015 00:06:18 GMT

Could you speak to his doctor about not only pain medication but also psychiatric support? If he can find the right psychiatrist or therapist, it might help. Best of luck to you. You are an angel on earth.

Re: How Do You Stand Watching a Loved One suffer?

Mindy D — Mon, 27 Jul 2015 05:32:31 GMT

THANK YOU FOR YOUR KIND POSTS. HE HAS A CONDITION THAT HAS ONLY MARGINALLY RESPONDED TO PAIN MEDICATION AND HE HAS TRIED EVERY KNOWN TREATMENT FOR HIS DISORDER, EXCEPT SURGERY, AND THE SURGERY IS EXPERIMENTAL AND HAS NOT BEEN SUCCESSFUL. HIS DISORDER IS RARE AND HE IS NOT DYING FROM IT. HE SEES A PSYCHIATRIST BECAUSE CERTAIN PSYCHIATRIC MEDICINES LESSEN THE PAIN; OR THE PAIN WOULD BE EVEN WORSE. I SEE A PSYCHIATRIST, AS WELL. TRY AS I MIGHT, I JUST CANT WISH THIS HORRIBLE DISORDER AWAY. HE SEES MANY SPECIALISTS. EVERY BIT OF RESEARCH LEADS TO SOME NEW HOPE.

Re: How Do You Stand Watching a Loved One suffer?

pggoody — Mon, 27 Jul 2015 06:55:07 GMT

I will certainly pray for you and your loved one. I am sure you have tried homeopathic treatments as well. Acupuncture ??? And I thought I had a difficult day today.......bless you🙏

Re: How Do You Stand Watching a Loved One suffer?

Big Sister — Mon, 27 Jul 2015 09:33:39 GMT

@Mindy D wrote:
I feel so bad watching my love one suffer in excruciating pain. It has been twenty years of nonstop pain. My poor loved one is finally at the end of his rope in his ability to stand it. I feel so bad inside, but I still have hope for a cure. He is starting to lose hope and writhes in pain, crying and trying to get through it. If I had three wishes, I know what my first one would be.

Mindy, I feel so bad for you and your loved one. If you think that he is close to death, please call in Hospice. They will make sure he is comfortable and without pain.

I can't imagine what he and you are going through. It's just not right.

Re: How Do You Stand Watching a Loved One suffer?

HiLo — Mon, 27 Jul 2015 13:54:48 GMT

@pggoody wrote:
I will certainly pray for you and your loved one. I am sure you have tried homeopathic treatments as well. Acupuncture ??? And I thought I had a difficult day today.......bless you🙏

I have used both Homeopathic and Acupuncture; it has literally saved my life! When modern medicine couldn't help, out of desperation I tried both of these methods. They both worked for me.

I sincerely hope your loved one will try either of these methods, probably acupuncture as it is easier to find a practioner . Acupuncture is rapidly becoming very popular all over the country, being used in many teaching hospitals such as Johns Hopkins, VA hospitals, National Institutes of Health in Bethesda; I could go on and on and it has no side effects. The older doctors don't seem to get it but the younger ones are all for it.

May God lead you to just the right place for treatment; praying that your dear one will get relief from the pain.

Re: How Do You Stand Watching a Loved One suffer?

keeper of the koi — Mon, 27 Jul 2015 14:51:35 GMT

Mindy ,I am so very sorry to read your post. I can only add that I will pray for you and your love one. I wish I could help you more but know I am thinking of you. You are his angel what a wonderful gift you are giving to him. I hope you find some solution soon for you both. Lifting you up in prayer ....Maryanne

Re: How Do You Stand Watching a Loved One suffer?

goodstuff — Mon, 27 Jul 2015 14:41:54 GMT

I am so sorry to hear this, Mindy.

Just wondering...... Have you considered visiting one of the major national medical clinics like the Mayo Clinic? They specialize in diagnosing and treating complex and unusual disorders and put a whole team of specialists on the job to work together in finding the best solutions. Mayo has several locations in the country.

Prayers for you and your husband. I hope he -- and you -- can find peace and relief.

Re: How Do You Stand Watching a Loved One suffer?

Mindy D — Mon, 27 Jul 2015 18:31:17 GMT

Acupunture, biofeedback, and a grocery list of other unconventional treatments did not stop the pain. He is not dying from this disorder. Even the strongest pain medicines he had following surgery, while staying in hospital, did not stop this pain. He even continued having the pain, when he was treated for pain, in the ER for passing kidney stone. Sorry, I spoke about this, but I needed to release the sympathy I have for him. It is so hard to watch this and be helpless. He is going to try something he tried before, but in a new way. He has a prescription for this, but we having trouble getting it. I convinced him to try this, again, because there is research which shows this treatment helps some people. It will be some time before he starts. Thank you all, again.

Re: How Do You Stand Watching a Loved One suffer?

Mama Mia — Mon, 27 Jul 2015 18:28:08 GMT

I am sorry to hear this, but why put it our here and refuse to say ,

what the conditions is? And to say in twenty years there has been no help. I feel so badly for you both

Re: How Do You Stand Watching a Loved One suffer?

goodstuff — Mon, 27 Jul 2015 19:54:31 GMT

I am thankful you are still willing to try new approaches. I really pray you find something that gives him comfort.

I don't mean seem pushy........but it's hard to believe that something can't help your husband's pain! I'm a medical assistant and have worked with a surgeon who worked with cancer patients, etc. I can't remember anyone who couldn't find some way to manage pain to at least some extent. I fervently hope your husband can soon count himself among the success stories!

Some pain specialists are anesthesiologists or have anesthesiologists on staff. They're specialists in pain control and can usually find a way, even if it involves combined drugs or surgeries or other procedures to deaden or inactivate nerves. Please don't give up! There must be a "right" approach out there!

Re: How Do You Stand Watching a Loved One suffer?

dancingwoman — Mon, 27 Jul 2015 22:01:46 GMT

OK so I'm gonna go out on a limb here and maybe have my post disappear...but have you considered medical marijuana?..Not the kind you smoke but you can get oils and extracts that have been proven to work wonders on pain..you can take them orally or topically...I don't know if its legal in your state..its worth considering..there have been many studies on this...DW

Re: How Do You Stand Watching a Loved One suffer?

Mindy D — Tue, 28 Jul 2015 13:49:14 GMT

Dancing woman,there is relief of some pressure that accompanies the pain with mm. Hard to find the right combination of cannabinoids, but there was one day, while visiting a legal state, just one day, he was pain free. The latest treatment to show some hope was tested at UCSF. They now need to do another study; double blind. They are not recruiting, yet. I have been checking everyday. We have been following the work of the chief specialist there. He is a renowned expert in this disorder. For the lady that mentioned cancer pain, yes cancer pain responds to opiates, but this disorder only marginally responds to specific opiates; cancer patients, while in terrible pain, get more relief from their pain, with them. The disorder will not respond to nerve pain medicine, either. We will try high flow oxygen. Oxygen did not help, years ago, but this time it will be administered differently. Just wish him some time without pain.

Re: How Do You Stand Watching a Loved One suffer?

violann — Tue, 28 Jul 2015 19:01:43 GMT

If one has done an EXTENSIVE investigation and knows both risks and benefits, I can see NO reason why one would reject a possible trial of the derivitives of Marijuana.

I had a horrible flare last week, and if I had access to legally available pot, I would have tried it then.

Mindy, you are a dear good soul to keep your vigil. Has this person tried EVERY alternative as far as pain relief is concerned?

I sorely hope that neither you nor he feel the slightest reluctance because of the idiotic, groundless comments in the popular press about MM.

I will be praying and sending most sincere hope that any treatment that helps in any way will be available and that you and he can take advantage of it.

Re: How Do You Stand Watching a Loved One suffer?

sunshine&rainbows — Wed, 29 Jul 2015 00:35:47 GMT

@Mindy D wrote:
I feel so bad watching my love one suffer in excruciating pain. It has been twenty years of nonstop pain. My poor loved one is finally at the end of his rope in his ability to stand it. I feel so bad inside, but I still have hope for a cure. He is starting to lose hope and writhes in pain, crying and trying to get through it. If I had three wishes, I know what my first one would be.

@Mindy D

Just a thought, is there something he always wanted to do, like travel, visit other relatives, friends?

A long lost friend you could find for him, skype, facetime?

Visit museum's, going to a park, favorite restaurant, taking a drive to enjoy the scenery?

Books on tape, a movie night?

I know when I traveled and went to visit family or friends it took my mind off the pain for that moment.

You said he has meds on board, so just do something even if its just for a little while, to occupy his mind and keep him busy.

I will say prayers for you both.

I hope you two can enjoy sometime together doing something he would enjoy, Have some adventures together, make some memories...

Re: How Do You Stand Watching a Loved One suffer?

Tinkrbl44 — Sat, 01 Aug 2015 05:17:31 GMT

Mindy, when was the last time he had a Pain Management consultation?

It sounds like it's WAY past time for another one!

Re: How Do You Stand Watching a Loved One suffer?

dex — Sat, 22 Aug 2015 15:45:16 GMT

My mom who is 89 recently stopped using all her meds and started medical M...she feels better than she has in years and all of her confusion seems to be gone.I think this treatment has a lot of possibilities yet to be discovered.I hope your DH finds something to help soon...twenty years of suffering is unthinkable.I hope that you will continue to have the strength to get through this and I think that you are a very special person.