Topic: Husband's symptoms

Hello all,

My husband is getting palliative and/or hospice care since March. As some of you may recall, he's had some issues. He is somewhat jaundiced because his stent does not seem to be working as well as it once did. It still clearly is draining into the external bag. But, his doctor thinks the tumor has likely grown and another duct is blocked. Al has chosen not to have another stent procedure.

I recently have noticed that the palms of his hands and bottom of his feet are kind of ashen or gray in color. It is quite noticeable since the rest of the skin has the yellow hue. Has anybody else ever seen this? Whenever I bring anything up to the hospice nurse, they just act like he's doing great. I agree with the positive attitude around him. I just don't have any idea why somethings happen. Also, I continue to work and I am trying to get a feel for an answer from them if it is time to take time off. Every time I feel I need to be home, he rebounds.

Anyhow, thanks for any answers or advise.

Shelley

Re: Husband's symptoms

Oh Shelley, I am very sorry to hear this. I have a list of what to expect near the end, and though people are all different Teddy really followed it to a T. I would be happy to e mail the list to you so you will know what to expect. I am a firm believer that we know ahead of time, as the patient, when our time is near. Be very open with each other as it helps the rest of the terrible journey. Feel free to email me anytime and let me know if you would like the list. My Prayers and thoughts are with you. I am not a believer in sugar coating things as I feel everything hits harder when the truth is not spoken.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Husband's symptoms

Hi Lainy, you have sent me the signs before. So, I guess this must be #10, loss of circulation. I just do not see any mottling. His appetite is really decreasing too. I get so confused though because it is such a roller coaster. One day he is doing well. Then the next day he is really bad. Every time I think it's time to take off from work, he surprises me and has a few really good days. When I try to talk to the hospice nurses, they just tell me that no one ever really knows. I understand that. I just want to know if I should be home. Right now he can still get things for himself.

Re: Husband's symptoms

Shelley, Teddy had days like that too. I think the mottled could also be ashen. Teddy never got that. Have you asked the Hospice  Nurses if you should be home? I know they do a good job but sometimes it is so frustrating. But then they really don't know. The day I had to take Teddy to a Hospice Facility (4 days before the end) no one would look at him and even think he was that sick. Must have been the olive skin. He seemed to understand this was it with no fright or anything. The hardest part for me was he agreed he needed to go  but requested I drive him. I will NEVER forget that ride. Somehow we do what we have to and no regrets. You would have thought he was going to a hotel. Once settled he said to me, "Have you made plans?" Of course, everything you asked for. He says, "I should have known!" We both laughed! People who knew us could see this scenario happening.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Husband's symptoms

Shelley....possibly your husband is anemic.  A simple blood test would confirm this. Much of the symptoms you are describing appear to be related to diseae progression however; I am wondering why your husband has not agreed to a stent replacement?  It is for palliative purpose only and may prove to be immensely beneficial in providing symptoms control.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Husband's symptoms

Hi Marion,

Thanks for your reply. It's true, he could be anemic. But, they just did a blood test to check for ammonia and I believe they checked his red blood cells too. I am assuming it is likely disease progression. He does not want any treatment. He saw his dad and grandmother suffer and chose no treatment. As for the stent, the one he has is working. It is flowing well into the bag. The hospice doc thinks there may be another duct blocked. He has had stent replacement. He just doesn't want a new PTC with a new stent. He said it was the worst pain he ever experienced.

Shelley

Re: Husband's symptoms

Shelley did they not put him to sleep???? Teddy had a lot of stent exchanges and they always put him to sleep. I am upset to hear this as he should feel nothing! On the other hand if they are SURE it is not the stent I guess you can rule that out. I feel so bad for all of you and wish there was something I could do. Hang in and Be Strong!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Husband's symptoms

Shelley....your husband has a valid point and good reason for making his decisions the way he does.  I wish with all my heart for him to have the most achieveable comfort.  In re: to end of life, Shelley, I believe that things just don't happen that suddenly.  Given the circumstances, at present it appears that your husband is doing rather well.  The decline will be rather obvious and you will be very much aware.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Husband's symptoms

I had to take my husband, Al, to the ER last night. He was very confused and agitated for the past week. I felt he was a possible danger to himself or me. In my opinion, hospice was doing nothing to help. So, we temporarily revoked hospice and he is inpatient getting some much needed fluids, pain meds, care, etc. He will likely be released tomorrow and we are going with a different hospice company. 

Anyhow, the reason for my post is to ask if anyone else had a loved one who had very low blood sugar due to disease progression. Last night in the ER his blood sugar was 43. He is not diabetic and not hypoglycemic. His sugar has always been normal. They have given him glucose and it is now in the 70's. Has anyone else had this issue?

Re: Husband's symptoms

Dear Shellina,
I can't answer about the blood sugar but I am wondering how you and your husband are doing. Is he home and with the new hospice? How is his agitation?  I hope you both are getting more support.
God bless, Willow

Willow

Re: Husband's symptoms

Willow, all that the doctor's at the hospital said is that all of the symptoms he had when he went to the hospital were all related to his CC. Apparently your blood sugar can be low because of the liver involvement.  Something to do with metabolism. His sugar was increased to 70 or 80 by the time he came home. He remained in the hospital for 2 1/2 days. He came home with a different hospice company because we were really unhappy  with the first hospice company.  The new hospice company seems to be better.

Unfortunately,  Al is really confused and having some hallucinations. He also has his days and nights mixed up. They took some blood on Friday to check his ammonia levels again. We should have results tomorrow. He is also extremely emotional. I am really  emotional too seeing him like this. They said it could also be the meds. However, they really have not increased anything. He knows he is confused and he is really tired. He wants it to be over. I feel so bad for him.

Re: Husband's symptoms

I am so sorry, Shellina.  I empathize with what you are both enduring, though I can not imagine going through it with my spouse.  I helped my elderly father pass from Alzheimer's in late April and he was very confused and agitated at the end as well.  It was wrenching to see him upset and uncomfortable. With the help of hospice, family and friends and strength from God, you will get through it. This is a very emotional and precious time and I certainly can understand why Al feels ready to go. He deserves to find his peace.  May you find peace and comfort as well.
Sincerely,  Willow

Willow

Re: Husband's symptoms

Dearest Shelley, this is the hardest part of all but know that it is hurting you more than Al. He is tired of the war and is preparing for his peace. As I had written to you use this time to just be together and cherish any thing he says and try to keep things light. Talk to him even if he is asleep and touch his arm gently, even confused and sleeping a lot he will feel your touch. Part of me hopes it is his ammonia level while the other part hope he gets what he wants. Shelley if you need to talk feel free to call me. Just e mail me and I will send you my number. I don't think we should post our numbers on here. We are all with you, right by your side giving you the biggest hugs.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Husband's symptoms

I am sorry that things have not gone smoother. Keep after the hospice nurses....keep calling and asking. There are wonderful drugs out there that can help with everything from the pain to confusion and agitation. The only trade off is of course he will sleep more. Your hospice should have a 24 hour number to call them and you should do that.

You may also research or talk to your hospice team about any local inpatient hospice. Sometimes those are available. The other thing I know that in my state our hospice patients are allowed a GIP (not sure exactly what it stands for) but it allows a patient to be admitted to the hospital and remain under hospice care. It's for control of symptoms that are difficult to manage at home such as pain or agitation. I am not sure of you state and your insurance but you may ask.

Also if he's covered under Medicare then he should be allowed a few respite days in a skilled nursing facility to so you can get some rest. Again in varies from state to state and if you don't have Medicare it varies from insurance to insurance.

You should have a social worked with you hospice team you can talk to and  I encourage you to do that.

Hang in there.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Husband's symptoms

It has been a really rough day. Actually, it has been a really rough couple of weeks. When I try to talk to the hospice nurses about his confusion, they come over, spend 10 minutes with him and don't think he is confused. I came home the other day and he had totally rearranged everything in the refrigerator.  Now all of the jars are in the cheese and lunchmeat drawer. He also placed bottles of pink beverages on a table in the dining room. He was decorating the house with refrigerator items. He can't remember when he last took his meds. He thinks I am trying to keep them from him. I have to keep them locked up. The other day he broke into the small safe I had them in. Thankfully, he didn't take too many extra pills. One morning I woke up and he was asleep in his hospital bed with a box cutter in his hands. He wasn't intending to hurt himself. He had been trying to sharpen a pencil. But, because of his confusion and agitation, it really scared me. I try to hide sharp objects now. He also has a biliary drain bag and he messes around with it. Today he broke a part of it. He'll stand in the bathroom and fool with it and bile drips all over. I am constantly cleaning up after him.

I am sorry to go on and on. I just feel like maybe you guys understand what I am going through. It is such a roller coaster.  Don't get me wrong, we have some good days. But lately they have been very stressful. Unfortunately,  I have no one to help me. Al's teenage daughter has only seen her dad twice since his diagnosis last December.

Anyhow,  I probably have said too much. It just feels good to talk to someone.

Re: Husband's symptoms

Shelley,

I'm so sorry what you are going through with your husband.  Please don't ever feel you've said too much on your posts.  You need to have a place where you can say what you feel and this is the place to do it.  There are a lot of caring and knowledgeable people here that are more than willing to listen and help you with advice.

Please take care of yourself.  That is the best way to help your husband. 

You are in my prayers.

Mary

Re: Husband's symptoms

Hi Shelley,

This is exactly what this site is for. To come here and let out things that are bothering you. We will never judge you, just offer you a sholder to cry on or a kind, listening ear. I'm sorry, but I have never had to deal with what you are going through. It must be very troublesome. I hope someone that has walked in your shoes will offer you some good advice. I would document all the things your husband is doing and tell the hospice nurses about them. Maybe he needs his ammonia levels checked as I know this can cause confusion. Can the nurse come over and stay with him once in a while so you can go out and get some alone time to gather your thoughts? I'm sorry for what you and your dear husband are having to endure. Take care.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Husband's symptoms

Dear Shelly, when you find out what his LABS are tomorrow and IF there is no ammonia problem, think about taking Al to a Hospice Facility. They will be better able to deal with what ever is going on. This could become dangerous for you or for him. I have never heard of anyone going this far. You unload here as much as you want, that is what we are here for and we are family! At this point the Hospice Nurses should be staying longer. They used to spend an hour with Teddy and that was before he got bad. Perhaps they are not giving him enough Meds or the right ones. I feel so bad for you. If his daughter does not come that will be her problem you certainly have enough to handle as it is. Please keep posting so that we know you are OK. Again, feel free to email me and I will send you my number if you like.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Husband's symptoms

Shellina,
The confusion causing bizzare behavior alone is difficult to deal with aside from Al's physical needs. sometimes I had to hire private people to sit with my father even though he was in assisted living dementia facility. It takes a village! He was so confused that he repeatedly pulled out his urinary catheter (no small feat since its inflated at the end). It became a medical emergency every time. I was relieved to have hospice after so many hospital ER trips but was surprised that they only come for quick visits, not to sit with patients. In Al's case, I agree with Lainey that it seems like you need more help and he needs more supervision so please look into a hospice facility or skilled nursing. I'm glad we can be a sounding board during this extremely stressful time.

Willow

Re: Husband's symptoms

Shellina...given the circumstances it is apparent that you need intervention in order to keep yourself safe and your husband's behaviour controlled.  As Kris has mentioned, call the 24 hour Hospice hotline and explain the situation.  If indeed the blood test results reveal encephalopathy (high ammonia level) then treatment is available.  Either way, dear Shellina, you may need to consider tending to your husband full time or you should refer to one of the options Kris has mentioned.  You need help, Shellina and it should be available to you.  Please keep us posted.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Husband's symptoms

Hi Shelly, my husband was on Haldol, an anti psychotic, for hallucinations like that. It did the trick and gave him several clear days. He is off it now because it has become difficult to swallow pills...though I think it can be crushed. Hope that helps.

Re: Husband's symptoms

Shellina,

I'm really sorry to hear what you are going through right now with your husband and I so agree with what the others say about you getting some extra help if you can. My dad was in hospice care and they took great care of him there. And please do not feel like you have ever said enough in any of your posts. Talk as much as you want to. Vent away if you feel that will help also as you certainly are among friends who know what you are going through.

My dad was on Haldol as well and that helped him quite a bit. In hospice, he was given it through a syringe driver along with some of his other meds and that way he was getting a constant dose of it and that worked really well for him with agitation etc. Perhaps that is something that you could discuss with the hospice team.

I really do think that you need more help here Shellina as there is only so much that any of us can do for someone. I was there with my dad throughout all of this and I so know that this is such a tough time for you right now. Please keep coming back here and talk with us as I know that when I was in your shoes talking with people who knew what I was going through helped me so much. Thinking of you right now.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.