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[mom23boys]

C.Ann I do not know much about this medicine. My father passed away over 13 years ago, he was on a morphine drip and extra neddles for pain till the very end, bless his soul.

My Mother did contact a furneral home a few days before he passed. So when he died at our home, one of us called the home and they already were informed of the situation. I think it was good that my mother did this, even though she knew he was dying, she was not emotionally ready to make that call.

I am sorry you have been going through this.

Sharon

 

[CynJ]

C.Ann my mom went thru major surgeries in 04 for an intestinal tumor (and had major complications) - they had put her on Ativan in the ICU to keep her calm and anixety free- we've spent MONTHS trying to get rid of her panic attacks and claustrophobia. My dad finally took her Ativan in hand dosage/timing wise and she's much better. So to answer your one question - being pulled off the Ativan like that can have major effects on anxiety/phobias etc.

As far as the funeral arrangements- if you aren't up to actually going to the funeral home and taking care of it you shouldn't force yourself- you are under so much stress right now. But what you should start doing is putting some things to remember on paper (ie your questions, a list of folks to call when he passes, outline the obituary so it can be a fitting memorial as opposed to thrown together, who you are going to ask to be pallbearers/readers/eulogy, etc).

Having some of the "administrative" details done now may help when he passes. When my DH's dear grandmother passed last Feb a lot of this was left till the last minute - and in the process no one bothered to ask if her 4 grandsons wanted to be bearers -my MIL arranged to have the funeral home take care of it (ie strangers would have carried her)- but when we brought it up to the funeral director that the grandson's wanted to carry her he said "not a problem".

Wishing you peace and strength,

 

[dash]

I am praying for you and your family. I am sorry the medical profession is failing you so and just adding to your agony. I can't advise you on the medication, but just wanted to write that it is not necessary to worry about the funeral in advance if you don't feel comfortable. My impression of funeral directors (both from my personal dealings and from my parents) is that they are well organized, know exactly what needs to be done and when, and can have everything ready quickly. It seems like have enough to deal with taking care of your husband's medical needs. Good luck and please post if you need comfort. You have hundreds, perhaps thousands of people rallying behind you here on the DIS!

 

[MScott1851]

CAnn..

Oxycodone is an ingredient in painkillers. It is in Percodet, Percodan, and OxyContin. I am going to assume that they are sending him home with OxyContin, due to it only being taken every 12 hours. This is a high dose of oxycodone that is in a time-release form. Percocet and Percodan are only 5 or 10mg, and are intended for short term relief of mild to moderate pain, such as sprained ankles or dental pain.

If in fact he will be taking OxyContin, it will be much higher dose, and it is commonly used in terminally ill patients for pain managment. Here is a good link with some info:

OxyContin info

The liquid morphine is used in hospice patients for "air hunger", when their body is just not supplying them with enough oxygen, as in CHF.

I hate that they stopped the Ativan. A benzodiazapene such as Ativan or Xanax is used frequently to reduce anxiety, especially in patients that have difficulty breathing. It relaxes them and also serves as a sedative, where they are even more disassociated from pain.

I am so sorry for you and your family. I cannot imagine the indescribable pain you must be in watching the man you shared your life with suffer this way. I am praying for you and passed you along to my parents and their prayer group. I'm sorry if my above explanations sounded cold and clinical, I just wanted to pass on accurate information. I hope that being knowledgeable about what is happening can make things easier on both of you.

 

[ginna74]

I had oxycodone after my gallbladder surgery and it was ok. Personally if he is in a LOT of pain I dunno if that would work. I took 2 every 4-6 hours for the first few days while I was awake. I don't remember the dose though. My uncle was on a morphine drip the last leg of his life and he still was bad off. I would ask for that if you can. And my aunt with her kids planned a few things before he passed. While he was able to be out he picked his burial plot (was next to a pond, he said lake front property ) If you can I would do some small things now. You will be greatfull when he does pass as you can focus on family. but it is up to you. Am soooo sorry


*** well think the above poster knows more about that med then me lol

 

[minniecarousel]

I agree C.Ann - do what you're comfortable regarding the funeral home now.

Wish I knew more about drugs. (good info from MScott though)

Hang in there, dear.

 

[Planogirl]

I don't know much about these issues but I wanted to say that you shouldn't feel bad about posting or asking questions! We're all here and I'm sure that no one minds at all, as a matter of fact many of us are quite anxious about your situation and hope that you'll post.

Again, I hope for all the best for you and your DH.

 

[DMRick]

Doctors respond completely different regarding medications once a patient is home on Hospice.
************
All Hospices work under a doctor..however, like the above person said, the nurses are more persuasive than the family is. Plus at that point there is a dx, saying the patient is expected to live less than 6 months, and curing care is over, and the care is based on pain relieve. Plus the burden of overmedicating is off the doctor, and onto Hospice. I personally feel that much towards the end, Hospice can keep a family sane. However, in the begining, there is still a lot for the family to do. As much respect as I have for Hospice, it' s still a tough road. I'm not happy that Hospice is making this family wait through a long weekend. Once they have hospice C.Ann's hubby will only have someone two hours a day to bath (even Hospice depends on private insurance and medicaid..and you have to qualify for the last) and administer to her hubby's needs. The meds will be given by the caretaker, in this case, C.Ann. Then there are 22 more hours to get through, and at this point her hubby is still aware and has needs, that will mean getting him up, and helping to take care of those needs. It's a lot for a little gal like C.Ann. I hurt for this family...I wish they would find him a room in the hospice wing of the hospital. I think it would be beneficial all the way around. Of course I assume the Hospice wing is different from the rest of the hospital.

 

[newholidayx2]

CAnn - Im sorry youre going through this

When DHs father was dying they had it all planned out - he was dying from cancer
When my father died my mother had to do everything (no decisions had been made) and it was hard on her - he died suddenly in his sleep from heart failure

but as another poster said "go only if mentally prepared"

 

[WDWLVR]

C.Ann - can't help with the medical question but I can with the 2nd.


When my mom was diagnosed with lung cancer I asked her early on if she wanted to be involved in any of the preparations (where to be buried etc.) since we had nothing set yet. She said yes so it was something we talked about during the next 6 months. Everything was done except the funeral home. She took a turn for the worse one week and we ended up having to put her in a nursing home. I called the funeral home on a Friday and made an appointment for Saturday. It was much easier talking about it in the future sense even though I knew it would be soon.

After making all the arrangements I went to the nursing home to visit her but she had been in and out of it by this time. I held her hand, told her I loved her and that everything was set.

The next morning was Sunday and DH and I went to Mass at 7 am as we always do. When I got home the phone rang and it was the nurshing home saying she had passed. I know in my heart she heard me say everything was set and she knew it was ok to go. One of our discussions in those early stages was knowing I wouldn't be there at the end. I know many people want that - but in our family it just doesn't happen. My grandmothers sister died while my grandmother (who was taking care of her) was at church. My grandmother died during the 1/2 hour it took my mom who had been sitting with her all day to leave and go home for some rest. So I knew it would be the same with my mom. Sure enough she died at a time she knew I wasn't there - because I was at Mass just like we had been with her for years before her death.

If you are emotionally ready I think it is much easier to do ahead of time. Then when it does happen you don't have to think of the details. In the end my mom was so ready to go and her quality of life was gone that I prayed for her release. It still hit hard as I'm sure it will for you.

Take care of the details now and most importantly take care of yourself.

 

[Serena]

I don't have any answers on the pain medicine. I'm sorry.

But as for the arrangements. I think I would be able to do it easier when it's sometime in the future instead of in the recent past. I would be able to handle it easier, or I think I could

However, you do what you are comfortable doing. Contacting the funeral home letting them know what is going on and that you will be needed their services in the future wouldn't be a bad idea.

 

[pw2pp]

I think that as long as he starts on Hospice right away (you can contact them now and they will send someone out immediately) then you won't have to worry about the pain med situation. Hospice Nurses and Doctors are the experts when it comes to relieving pain in the end.
My Mother went through Hospice (at home) 11 years ago and the liquid Morphine was the med that was given to her - although it may have changed since then. So please, don't worry about what meds the Doctors discharge him on, since that will all be taken over by Hospice anyway.

As far as the funeral home arrangements go...... I think that I would just wait until AFTER he dies and right now I would just concentrate on his last days on Earth and being there with him and making sure he is getting the care that he needs (which I believe will happen with Hospice). I think that RIGHT NOW is the most stressful time that you will have and that after he dies you will actually have a reduction in your stress level and I think at that time you will be better able to plan a funeral.

I will continue to keep you in my prayers.

 

[chyam]

If you have been assigned your Hospice team already please contact them and discuss all your concerns with them. They were involved with my mother, and I found them to be very open and concerned and basically did whatever we wanted or they explained why it couldn't be done that way. They still contact my dad (over a year later) to find out how he is coping. I cannot say enough good about the group.
Secondly I would get with your step daughter and go make the arrangements, it will be much easier now and as posted if something happens you call them and they are right there if not you will have to go and make the arrangements while your loved one stays put for awhile.
I know that part is not easy. When my mom passed, Hospice called and told us and then called the funeral home. (It was the middle of the night)
Everyone handles things differently but Hospice was a God's send to us.

 

[dg39]

First let me just say, C.Ann, that I'm terribly sorry for all your going through. I know that if anyone of us here on the dis. can take away even alittle bit of the pain and sorrow your feeling now, we would. Just know your in our thoughts and prayers.

As far as your medical question, I can't help you with that. I don't know the answer. But for your other question, this is our experience. My father passed 3 yrs. ago. Right after his passing, my mother, myself and my dh went to the funeral home to make arraingements for his cremation. It took around 1 hr. to fill out forms, give info. and choose urns. We were obviously upset and most of that time is a blur to me. If, god for bid, I need to go through this time again, I would rather have all the arraingements and details done in advance. There would be alittle less stress and then after the hospital we would have just gone home and dealt with our loss ourselves, instead of making decisions with an emotional mind.

 

[goofy4tink]

C.Ann, I was thinking of you all night. Almost go up to see how you were doing. Wish I had. I can't give you any pain meds insight. But I can share my funeral planning experience.


When my mom died a year ago, we had already discussed a lot of things with her. Well, at least I had. I knew exactly what she would want. My brothers had no clue. It was hard sitting there, making those choices. If, and only if,you are comfortable doing it now, that would be my suggestion. Your family can go with you, and should. Start working on the paperwork. There were things that I forgot to add for the papers and I felt terrible about it. If I had had some time beforehand it might have helped. But, if you have any doubt about doing it beforehand then don't.

I'll continue with those prayers for you all. It's a truly horrible situation you all are in.

 

[720L]

I agree with the other poster--call Hospice NOW. Even if your husband is not officially on Hospice yet, they will talk to you. I think that Hospice kept my Grandma on Ativan, but can't remember for sure. I don't understand why they would take him off that if he is agitated. Talking to Hospice about the funeral thing would be good also. They are trained for this.

 

[froglady]

C. Ann, I'm having flashbacks while reading this, and your other, threads.

I went through the same thing with my father; fighting to get adequate pain medication, trying to get Hospice on a weekend, trying to get ANYONE to understand that he had had ENOUGH, and just wanted to die in dignity, with as little pain as possible!

I'm afraid that I didn't get ANYWHERE until I demanded to see the "person in charge around here" who could listen to me NOW, or listen to my attorney later! My father got morphine (which I had been begging for since 8AM; itwas now 3PM) within 5 minutes, and was moved to a private room ASAP. Hospice had been contacted the day before, but they don't do evaluations on the weekend, PERIOD. I even contacted a former Hospice nurse I know, and she was unable to get anyone to come. She gave me a crash course on that aspect of care. (I'm a nurse, but only in a hospital setting where preserving life, even in the face of innevitable death, is the norm.)

Even though the decision had been made for comfort measures only, I still had to argue with one nurse about pain meds. She kept saying, "You know if I give a higher dose it might kill him, don't you?" DUH!!! HE WAS DYING ANYWAY!!! I just wanted his suffering to be over!

My father was on oxycontin for weeks; it didn't control his pain. He ended up on methadone prior to them finally switching over to morphine for the last 30 hours of his life.

As to the funeral, at least notify a home so they can come out ASAP when he passes, whether it's in the next few days, or the next few months. My parents live(d) in eldery housing, and they had to list a funeral home on their rental application, so I already knew who had to be notified.

My heart goes out to you; and I feel your grief and anger. Dying shouldn't have to be so painful in this day and age.

 

[pirateofthecarolinas]

I have no advice on the meds. My BIL is a doctor and he ran interference for our family when my father was dying.

My father's doctors told us to go plan the funeral because he wouldn't live past the weekend. We did. He lived 13 more months. The funeral director was so kind and sensitive to my family. We were able to calmly tell him my father's wishes. It only took 90 minutes max. It was such a relief to have that over with. I firmly believe it is EASIER emotionally to do it before someone dies. Over the next 13 months, my mother added things that we had forgotten and she found all of the clothing that she would need when the time came. We visited the florist and made floral arrangements. Mom talked with the minister and arranged a vocalist.

After someone dies you think things will be calmer but it was a very busy time. The nursing home called and wanted Dad's things out of the room because they needed it for another patient. Now that was very difficult but understandable. The house needed to be spotless for visitors. There is a constant flow of people in and out of the house.

You and your husband are in our prayers. Do what is comfortable for you.

Lori

 

[Yardbird]

-------------------------------

This is exactly what I was afraid of because they are SO adamant about not wanting to treat his pain in a "humane" way..

The really frustrating part is that the Hospice people have told us that they will have to get their medication "orders" from the primary doctor my DH sees at the VA and we all know what that means, right?

What am I going to do??

It is true that the nurse/case manager gets the orders from the primary doctor however, the nurse/case manager requests meds for the patient.

When the patient signs on to Hospice, the nurse orders a "comfort kit" for each patient. which is kept in the patient's home. This kit includes things such as ativan, morphine, haldol, etc. When the patient has an issue of pain, restlessness, anxiety, etc., you or another family member phones Hospice, and they instruct which med to give him out of the comfort kit for immediate relief. Then, according to the patients needs, the nurse will order the meds for the patient.

Each Hospice has a medical director, and if the patient has needs that aren't being followed through by the primary doctor, the medical director can get involved.

Hospice will do whatever possible to keep the patient comfortable. In between nursing visits, if you see that he is having pain, inform them immediately. There is always someone on call.

We have someone that does weekend admissions. Is this the only Hospice that services your area?

I know that you have so much going on now, and understand your feelings about making final arrangements before hand. It is sometimes easier to have these things in place. If nothing else, at least phone a funeral home to make them aware that they will be receiving a call in the future, they will instruct you what to do. The Hospice social worker can help you with this also.

Please feel free to pm me. You, your husband, and your family are in my thoughts and prayers.

 

[rasnlms]