Feedback, pls, re:DD(step) & melanoma

[Pea-n-Me]

How did it go today, kdzgon?

 

[kdzgon]

How did it go today, kdzgon?

It went badly (for our hearts) but better for our DD. It was a very long day.

It started out with a phone call from her live-in boyfriend - the visiting nurse told him she likely would only have two weeks left, and strongly recommended we try to get her admitted to the hospital. Of course we already knew this, but it was quite a shock to him.

We arrived at DD's house shortly after (~10 AM)- her appearance was shocking to say the least. She had some difficulty talking, and she was slightly confused as well. (The nurse had started her on oxygen, but she didn't want to use it and had already taken it off.) I got her settled with fresh water and ice, something for her severely chapped lips, cleaned up her area, etc. By time I was done, the visiting nurse stopped back, as she was very concerned that DD was alone (she didn't know we were on our way when she left).

We discussed DD's condition as well as the fact that it appeared DD really had no clue just how little time she has left. She had deteriorated quite a bit in the 24 hrs since the nurse had seen her, and some confusion was setting in, most likely due to the lack of oxygen. Based on the rate her numbers have been falling, her hemoglobin is probably somewhere ~4 or so (even her mucous membranes are drained of color, and her teeth are stained with the sloughing cells, etc.) The nurse also recommended she be transported by ambulance - even without seeing her, I would have agreed - I had already spent the night before on the internet searching for transportation options.

DD was NOT happy about either the suggestion to be admitted or the ambulance. She did agree that IF the doctor recommended it at the appt, she would go in to the hospital.

Lots of phone calls ensued - to her insurance co, more than 15 ambulance providers, several to the doctor, the county human services dept, etc. No ambulance would transport her to the hospital where she has been treated, with several refusing to transport her due to low blood O2 levels. I then called the doctor back - who, BTW, is a covering doctor, and absolutely wonderful. (Had her regular dr been available, I would have pushed to have her transported to the nearest hospital, which also happens to be connected to one of the best cancer hospitals in the country.) I told him we had two choices - go by ambulance to the closest hospital, or come to his hospital via our private vehicle, where the dr had already arranged to have a special nurse available to meet her upon arrival. We spoke at length about her condition, her knowledge of her disease progression and the family's knowledge, and the reality that there was nothing more that can be done to fight the cancer. He then offered a third option: we take her - by ambulance if possible, car otherwise - directly to the hospice facility run by the hospital. It has only 12 beds, is peaceful and quiet, she would be admitted and placed in a room immediately (our avg emergency rm wait at the hospital has ranged from 10 - 18 hrs before admittance and rm placement), they would care for her properly as well as make her as comfortable as possible etc.; he would make all the preliminary arrangements for us. She would then be evaluated and meds adjusted as needed. Once there, he would also help transition her (and remaining "clueless" family members) to the realities of her condition. We would have to sign a DNR, but she could always choose at any time to transfer to the hospital if she decided she wanted to continue the fight.

I absolutely agreed this was the best option and asked him to make the arrangements. I then discussed it with DH, who agreed it would be a good option. I contacted the nursing station at Hospice, and they took a bunch of information incl her pain meds, as they needed to order them and have them on hand before she could be admitted. They switched her oxycontin to a patch and her other pain med to a liquid as they said she would soon be unable to swallow the pills. As the pain meds would not be there until 6 PM or so, we had to wait until then to bring her in. The social worker then called me, and we reviewed more info, and I told her of the problem I was having getting an ambulance. She said she had one more to try, and would get back to me. She called me back in a short while, and had an ambulance willing to transport her. It was a company that had turned us down earlier - apparently the difference was we were now going to Hospice and not the emergency room, so their parameters are different.

The next step was harder - breaking the news to DD. We committed a lie of omission, and did not tell her there was a choice. We told her this is where the doctor wanted her to go as admission would be easier for her, it was quiet and peaceful, family can stay overnight with her, she would then be evaluated and could always choose to transfer to the hospital. (All true, even if not all the truth.)

I was on the phone with the social worker when DH came running in a panic - DD needed to go to the bathroom, but was unable to walk the 6' or so - in fact, she was unable to take a single step forward. Problem was, there is no bedpan, and DD is up around 280 - 290 lbs right now. I managed to fashion one out of the raised toilet seat, a bowl and use of the lift chair. DH helped her stand again while I got her bandages in place and her clothes on, and we got her seated again. I relate this story because not a half hour later, DD is complaining about "do we really need to use an ambulance?".

The ambulance arrived around 5 pm, and they were great with her and extremely efficient. It's a good thing I had my gps, though because they were gone in a flash. I met up with DH and DD at hospice - by time I got there, they already had her in a room, pain meds administered and all set up with ice chips, call button, tv remote, etc. She refused the O2 when she first arrived but agreed to put it on just as I walked in. The staff at this Hospice is absolutely wonderful - I just cannot describe how great they were. They are all aware of DD's apparent fragile remaining grasp of hope and our method of gaining her admittance there and just operate around it. They say they will continue to take their cues from her as their only goal is to make sure she is as comfortable as possible. She also has no advanced directive, no will, no living will and is now to medicated to legally sign any docs. DH signed the admission forms and signed the DNR on condition they not reveal that fact to DD until after the doctor has had time to transition her as to her prognosis.

So, it was a wonderful day in that it is a 180 change from the treatment she has been receiving (visiting nurses excluded - they have been great) and we know she is in a good place for where she is in her life right now. I know DH had to finally truly accept what is to come but is much more at peace with the inevitable now that she is where she is. It was a terrible day because there is simply no hiding from the fact that she needs to be here, and she will continue to deteriorate, most likely at a rapid pace. I will be surprised if she makes the weekend, a sentiment when expressed not challenged by either the visiting nurse or the hospice staff.

Thank you so much for sticking with me these last days - the burden of knowing what was happening was simply too much to carry alone any longer so I appreciate the extra hands and shoulders you so willingly extended.

 

[Mackey Mouse]

ok..tears dripping down my eyes here..

God bless you all, I am usually very good replying.. maybe later tonight I can think a little more clearer, I am overwhelmed..

She is so lucky to have you as her StepMom.. so lucky.. hugs to you and your husband and prayers for DD..

Please let her have no pain and God be good to her..

 

[Pea-n-Me]

I'm so glad she's in a good place and being well taken care of. Nice work.

I hope you can rest a litte easier today. You will all remain in my prayers.

 

[kdzgon]

A quick update between visits: it seems DD's last conscious day may have been yesterday. She was in a lot of pain early this AM, so they have doubled her patch pain meds, and re-administer every two hrs. It keeps her totally out of it, but it is for the best.

How's this for a tear-generator: they were getting ready to change DD's bandages, and DH pointed out the ones we had brought with us (they are special order w/ silver nitrate, and we thought they might not have them on hand). The nurse commented to DD that "[her] dad is a really special guy", to which she replied "yes, he is".

To the best of our knowledge, that is the last clear statement she has made, as just an hour or so later conversation attempts resulted in lots of unrelated, mumbled responses or just plain gibberish. She has not spoken at all since late last night. She will likely have many visitors the next day or two, but it is unlikely she will be able to communicate with them in any "normal" way. Her condition has worsened significantly and they expect the trend to continue. I really think it is God's way of dealing with this for her, as she just did not want to confront the reality of her situation.

 

[Jcricket Fan]

My prayers continue to go out to your DD and you & DH.

I am glad that Hospice care is bringing some relief.

Peace be with you.
Colleen

 

[Mackey Mouse]

Her Dad is truly a special one. It is hard for me to read these sometimes because it is a reality that loved ones face when their family member or dear friend is at the end of their battle...

Please know we are here for you and I do believe that God has stepped in and taken control. Please let her have no pain...

HUgs to you and your husband.. prayers for DD. It is so nice to know that when it gets so bad that Hospice is there for you..

 

[kdzgon]

LOTS of people visiting last night, although she was not responsive, except with the nurses when they changed her bandages (a very painful procedure).

I'm pretty sure she is aware, though - I truly believe while the pain meds put them "out" in many ways, they are more cognizant of the presence of others, much in the way a person will sleep better when his/her spouse is present even if sleeping deeply. I think that particular "sixth" sense heightens as our other senses fail us (her sight was going as of Wed evening - she was complaining she could not see, which the nurse said was all related to her failing systems).

DH told her she should go if she wants to, that it is OK. I don't think she's ready yet, though. I think the transition will be more difficult because she didn't really have time to process it all, but I hope and pray she manages to find peace before leaving.

Thanks again for the prayers and thoughts.

 

[Pea-n-Me]

Thanks for keeping us updated.

 

[kimis]

You are in my prayers. There is nothing else to say except I have been there also. However I love Hospice. They were great for my mom and our entire family.

 

[Mackey Mouse]

Thanks for keeping us updated... prayers for her and for all of you...

Thank God there is such a thing as Hospice.

 

[dee47]

First of all, you are all in my thoughts today. I am so sorry you are going through all this, especially of the heels of other similar tragedies you've suffered in recent years. However, at least you are in the best place possible, under the circumstances, right now.

Regarding the 6th sense you mentioned: I've seen it as a hospice volunteer and also, more recently, when my ex-MIL was in hospice dying from gallbladder cancer (an evil disease -- 3.5 months from diagnosis to death, in her case). She was in a coma, and her vitals were so bad the nurses were saying she couldn't possibly last another hour. However, her younger son was on a plane on his way to CT (he lives in FL, and she deteriorated INCREDIBLY fast, so everyone was scrambling). She lived for another 6 hours (!), enough time to allow him to get there, talk to her (though she was supposedly in a coma), and hold her hand (along with the rest of her family) as she died. We can absolutely control when we go, to a degree most people don't appreciate. And people are more aware, even in their final hours, than we sometimes realize. That is why in hospice training they always drilled into us to watch what we say around the patient, no matter how "far gone" he or she looked.

I wish you all peace.

 

[safetymom]

I am so sorry to hear about her health struggles. She may already know what is going on but hasn't told anyone. Just support and help her and she deals with all of these.

I will keep you all in my prayers.

 

[kdzgon]

Thank you all for your kind thoughts, words and prayers. We lost our DD Friday evening at 10:45 PM. I know she is finally out of pain, but there is a hole in our hearts.

I really think her rapid decline was God's way of helping her deal with the fact that she did not want to acknowledge the reality that her time on Earth was coming to a close. She passed peacefully and without a final struggle.

Laurie

 

[Pea-n-Me]

I'm so glad she made it to the facility where she could pass with dignity, and I'm so sorry for your loss.

You can be proud of the good work you did to help her. to you and her Dad.

 

[safetymom]

Oh my goodness. I am so sorry for your loss. I will keep you in my prayers.

 

[antmaril]

I am very sorry for your loss.

 

[Mackey Mouse]

Laurie and her dear Husband..

I am so truly sorry for your loss. I know how hard you and your husband worked to keep your DD comfortable through this horrendous disease. Know in your hearts that you did everything possible to help her and she knows that too. Sometimes it is so hard to face that realization that there is no treatment that is going to make this disease stop and finally your body says enough, but your mind isn't quite there yet. Thankfully, you were able to get her into a caring Hospice, thank God for those wonderful people who work in these facilities..and they took care of her and took away the pain.....from everyone.

Please know that we will be thinking of you all the next few days. Take care of yourselves and your DH...we are here to listen if you need us.

Hugs to you both.....

 

[dee47]

You are wonderful parents. I am so sorry for your loss.

 

[kimis]

I am so sorry for your loss. I know from expierence that words don't seem to help right now but soon you will look back on what all of your friends said and you will be comforted. I know the whole in your heart and it will always be there. However I have found that when we lose someone so close to us and our heart seems empty and has a huge hole in it than for some reason our heart just grows bigger to make room for other memories. Thank goodness she left this earth knowing she was surrounded by the love of her family and with dignity that Hospice gives its clients. You and your family will be in my prayers for a long time.