Topic: [Sensitive] End is getting closer?

Feeling lost. My husband is sleeping more and more every day. When he is awake its like he's not even with me. He doesn't talk much and when he does its short answers. His appitite is small, he may eat a couple of bites for lunch and maybe the same for dinner if he eats at all. Drinking water has diminished to only 2 glasses a day. I have noticed when he sleeps his arms, hands and feet twitch a lot. The last 2 days i have noticed that he gets confused on things. Like our dog needed outside and he couldn't figure out when it would want to go outside. And I had gotten him a fresh glass of water then when I walked away to take a shower he asked my daughter to freshen his water so she did then 2 minutes later he asked her to do it again. She asked him didnt i just get you fresh water and he told her no that is was water that I had gotten him hours ago. Then today his parents stopped by to see him and he didn't remember.
Hes 134 pounds now. There's nothing to him. I am so scared.
It seems like if something is going to go wrong its all happening now. Luckily I stepped out in the garage to talk with his brother on the phone today because I noticed the chimney pipe had a hole in it. My house would have burnt down if I wouldn't have caught it.
My kids are having a hard time wanting to go to school. My daughter spent her first hour with the principal talking with him because she had a break down. My son has a stomach ache daily. Some of the kids make nasty remarks and they need to be slapped. The kid asked my daughter if he could have a drink of her water and she told him no that she didn't need to get sick. He couldn't see what the big deal was so someone told him she dont need to get sick then have her dad catch it. The kid had the nerve to say so whats the difference he's going to die any way. She almost punched the boy in the face but the teacher pulled her away. What is wrong with kids? How could they say something like that? Makes you wonder what their parents are like. It took me everything not to call the kids house.
I made an appointment to get arrangements made at the funeral home for Tuesday. I can't sleep because thats all I can think of. I just can't believe this is happening. No one on his side of family has been much help except his brother. His mom is just plain crazy and wants to call and argue with me. She thinks if they want to come visit i should wake him up so they can visit him. I have been good at keeping my cool but not sure for how much longer.
I know he's not going to be here much longer but still having a hard time excepting it. Hospice told me last week maybe 2 months but he's declined a lot since then. I even noticed he's looking yellow and so did others.
It's getting harder for me to sleep at night then during the day I feel like I'm a walking zombie.

I have a question. Some may think its weird but here I go. My beagle has been acting strange lately. He sniffs the air and even looks like something is there. Sometimes he acts like he's following it. The other day he was even growling. When someone is getting ready to pass do you think its possible that loved ones that have passed are here waiting and my dog is sensing them. It kind of freaks my kids out when he does it.
Well I guess I should try resting. Have a tough day ahead of me.

Best wishes and prayers to all,
Michele

Re: [Sensitive] End is getting closer?

Oh. Michele, I wish I could be there with you. I am in spirit, just believe that we are all with you. I think I had sent you that list of signs that the end is near? Michele I know this may sound harsh but it works. ANYONE who is not cooperating need not come to visit, you have enough to contend with. I let friends come for only 1/2 hour at a time and only 2 at a time. I stopped taking phone calls and instead sent out an email each night to friends and family telling what kind of day Teddy had. I am sorry but this is your time with your husband and children and that is a ton to manage and you don't need ANY outside interference, I don't care who it is. I remember I had a talk with my Rabbi and he said, "This is your time, you are the Boss!" it really was all I needed to hear. Bossy me became a bigger boss. As for the school kids, you can just imagine what kind of home that boy came from! About the dog, I have a little story. I knew a lady who had a daughter that went to school with my son. The daughter went for a bike ride, she was 19. We were to go pick the couple up and go to a party and when we got to the house it was about 5PM. She was so worried because 'Nancy' had been gone a couple of hours and that was not like her. The skies turned dark and it started raining. All of a sudden their dog went to the front picture window, stood on his hind legs and started moaning. He stayed at that window on and off for hours. Nancy never came home as she was attacked in a park. I am sorry for the sad story but felt it was a good example that pets do feel something. It's like if you don't feel well they can sense it and cuddle up in bed with you. PLEASE, Michele if you need to let out some stuff, anything, feel free to e mail me. I so know what you are going through! I am sending a ton of love and some huge 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: [Sensitive] End is getting closer?

Michelle,
This is probably the hardest thing you and your kids have ever gone through. Be kind to yourself and each other. When children are involved in the day to day process of watching their father decline, it breaks my heart, though I've heard that kids are amazingly resilient. Still, I hope that hospice social worker and the school are giving extra special counseling to them now and in the future. I also hope that the teacher/principal is aware of the water bottle incident and will address it with that thoughtless kid. You have enough in your plate but I'm hoping the school doesn't let that kind of thing go.
Your energy should be in loving and comforting your husband and kids. While I agree with Lainey that visit time should be limited, it would be cruel to altogether keep your husband's parents away from him. His mom will figure out for herself that he is not able to stay awake long and simply needs quiet company. She may have loving things to say to him even if he can't respond. The way you describe his condition makes me believe he is closer to passing than what hospice told you. All the signs are there, including withdrawing into himself, fidgeting, confusion, not eating/drinking.  I do believe animals sense when someone is passing. The way your dog is behaving makes it seem like a spirit is there though I have always been a skeptic about ghosts but honestly can't rule out the possibility. Last year I was in the hour by hour intense time of caring for my elderly Dad while he was passing.  Hospice gave us vague timeline too, but it happened fast (within a week of signing him up for hospice). My siblings didn't have time to get there. At my Dads assisted living, each resident has their own little apt. When Dad was within a day or two of passing, the resident cat started coming into his room. Never had before! We would often see the cat in the common/dining room and it always hung at night with another resident at opposite end of hall so I thought it was so strange that it was coming into Dads room. Being a scientist type, I kind of attribute this to maybe something that the cat could smell that Dad was giving off, like ammonia or other gas in Dads breath. Not really the same as how your dog reacting but I agree animal can sense things we can't. Would like to think that a departed loved one or an angel is there comforting your husband.
My sister is the one with CC and though she is stable generally, her CC is not. She has a 10 year old son who will have to go through what your children are and that is the most painful anticipatory grief for all of us, including my sister. When it comes down to it, we need to love each other and have as much patience as possible with each other. That and stay on top of hospice with all your husbands symptoms so there aren't delays in keeping him comfortable.
God Bless and comfort you,
Willow

Willow

Re: [Sensitive] End is getting closer?

Dear Michele,

I am so sorry that you and your family are having to go through this, but totally understand.  Only those of us who have been there really get it.  As for everyone else, I agree with Lainy.  You need to do what is best for you, your husband and family.  I also agree that pets do sense things we may not. 

Just know that we are all here for you to help and support you in any way that we can.  Wish I could give you a big hug, but lots of cyber hugs are coming your way.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: [Sensitive] End is getting closer?

Hi Michele,

I just want to say that I am thinking about you and your children.  It's not my place to tell you how long your husband has with you but like Willow I would be concerned about hanging on to two months and missing opportunities to say and do what you want to now.  We cared for my sister at home and I saw how rapidly she declined and new in my gut just how short her time left was.

You are doing what is right for all of you now - never doubt that.  Is there any care in place to sit with your husband during the day or night so that you can get some rest.  Even if it is for short bursts to give you some rest?
There is also medication that can be given to help if he is agitated with the confusion. 

Sending you much love and support.x

Clare

In the stars now . . . .

Re: [Sensitive] End is getting closer?

Dearest Michele -
So sorry that you are having to go through all this. It makes my heart break for you and like Lainy I wish I could be there to help you through it.
I understand about the family end of things. My husband's family is not very helpful and have in fact called me overbearing and controlling.....they are right I am. But nothing is going to change that when I am trying to do what's best for him.
As for his family imposing on you....screen calls, only answer if you feel like it. Also also your hospice nurse and social worker to help set boundaries....that is what they are there for. The social worker or nurse can help keep those boundaries firm by backing up what you say. And it helps to have them be the bad guy.
As for your children, maybe it is time for them to stay home. I am sure working with the school, they could continue to get their school work done but also get to spend some time with their dad. Children are thankfully pretty resilient but this is still hard. Talk to hospice some about Children's bereavement. Bereavement services are part of hospice requirements and most have some sort of program specifically for kids and if not they can make a referral.


Hugs,
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: [Sensitive] End is getting closer?

Dear Michele,
I so admire the loving care that you are giving your husband. When I read your description of his current state, it reminded me of the weeks and days before my husband, John, 58, made his passage. Just as you described, I was scared and it felt chaotic and I was exhausted from no sleep, and a zombie, and feeling terror. I'm not sure there's any other way to feel at such a time as this, but realize that you are giving your all to your dear beloved husband. If it's possible to hush your fear, try to do so in order to soak up the closeness that you can have at this time with your dear husband.
I would make one suggestion if you haven't already done it -- make a quick phone video of your husband saying a few special words to you and to your children, and of you saying some special words to him. My husband and I did this as he was nearing the end and I was so glad that we did -- I watch it often and will always cherish it.
Michele, the others who have posted are so right -- if you want visitors kept to a minimum, do so. This is your time to be with your husband, and you will cherish it when you look back and know that you were with him on his journey without the distractions of people wanting to "visit" or "keep you company."
You may not feel that what you are doing is adequate or enough -- it is! You are at his side and loving him. Right now enjoy looking into his eyes and being with him.
I have two young children also, 16 and 13. It sounds as though you are handling things very well, so speak only encouraging words to yourself.
I am wishing you much strength and love, and know that your long-distance family is thinking of you and keeping you and your dear family close to our hearts at this time.
And yes, our rabbit seemed to know more about what was going on than we did.
Much love to you,
Margaret

Re: [Sensitive] End is getting closer?

Dear Michele,

My heart goes out to you, your husband, and children. I do hope and believe that loved ones welcome us to heaven. I hope your husband finds peace and you find strength. It is such a difficult road to travel. Bless you all.

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: [Sensitive] End is getting closer?

Hello Michele.  I'm so sorry things have reached this point for you.  I am in almost the exact same position and it is the hardest thing I have ever experienced.   I love my husband so much and it breaks my heart to see him the way he is now.  I know you must be feeing the same way about your husband.  I think this will the greatest challenge we ever face but we will get through this somehow.  Please take care of yourself.  Linda

Re: [Sensitive] End is getting closer?

Michele & Linda,

I have been where you are now and it is the hardest thing I have ever faced. 
I can only repeat that you never know how strong you are until being strong is the only choice you have.  I found that to be so true.   I am living proof.  I feel I have been through the worst that could happen and nothing else can ever be as hard or hurt as much.  Just keep taking it one day at a time.  Live for today and enjoy the time you have for now.  Tomorrow will take care of it self.

My thoughts and prayers are with all of you as you go through this trying time.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: [Sensitive] End is getting closer?

To All Of You Courageous Ladies: You all know I AM a Believer and what nailed it was Teddy's last day. He had started his passage and lay in the Hospice Facility bed and for about 2 hours did not move or blink his eyes. All of a sudden his arms reached up as if greeting someone, he gave a come here wave with his hands and wrapped his arms around whom ever he saw, gave a big smooch on the cheek and this went on for about 3 hours. The only name he mentioned was when he said, "Oh, Mama". I know he was greeted by his Dad and that a big table of food was present with so many family and friends. That is why I always joke that he has a Sicilian restaurant in the sky. BTW when I went to my Psychic a year ago she verified the table of family and that he was met by his Dad as she told me something about his Dad she could have NEVER known. I know you are all scared, that is normal but my daughter and I felt so privileged to watch the amazing things that happened. My goal was to hold him as he passed and I did. And then the most awesome thing happened. He had this beautiful glow about him and every wrinkle and the bags under his eyes disappeared and if an old Sicilian can look beautiful he sure did and that is what I remember most now, not all the bad stuff he went through. Be strong and know that your loved one who is at the end of this awful Journey is going to be so happy and so at Peace.

One more true story. My Dad passed at 93. He never believed in things he didn't understand. Like heaven, magic etc, etc. The day before he passed I went over to the home as my Mom was upset that she couldn't wake him up. I couldn't either so I called the Ambulance. The only way they could wake him was to do the breast rub (Kris V you know about those) well he jumped up in bed and my mom said, "Norman, I was so worried about you". My Dad said "I just had the most beautiful dream." I said what did you dream and he said, "I saw Heaven and it was so beautiful!" He passed the next day.
The point of these stories is to try and tell you, if you even believe a little it can help with the end of the Journey. Sending a ton of love.

Being a believer hurts no one and brings such comfort. In 3 years I have logged 99 visits!

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: [Sensitive] End is getting closer?

The fast few days have been a roller coaster.  We have went from him to barley communicating, not eating, extreme confusion to now up talking and eating like crazy.
Now my main worry if this is what they call the spurt of energy( the calm before the storm) some get before the end comes. The hiospice nurse is fearing thats what is happening. Today is his birthday he is 47. The kids stayed home from school to celebrate it with him. They asked if he wanted a cake and he's all for it. He was up this morning and ate 2 bowls of cereal which just frightens me. For the past 2 months i was lucky to get him to eat half a bowl.
He layed back down around 10am and its 1:15 now so I am beginning to wonder if the energy is wearing off.
The kids have only made it to school one day this week which was Wednesday but only made it half a day. After what they watched him be so confused Monday they have been real upset. At one time Monday he acted like he didn't know who they were so he ran back in the room for a few seconds then came back out and said hi to them. That was the hardest thing to watch was the look on the kids faces.
The hospice nurse told me just to keep and eye on him and to be prepared for the worst to happen. She told me she can't be for certain that this is what's going on.
Seeing him with so much energy and being able to have conversations with hi. Is hard. It almost gives you false hopes like he's going to get better. I know thats what it has done to my son.
I just want you all to know I appreciate each and everyone one of you. With out all of you I dont know what I'd do. This group is wonderful. Prayers and hugs of out to all of you.

Michele

Re: [Sensitive] End is getting closer?

Dearest Michele, I do think this is the spurt but we don't know for sure as only he can pick his time. It would be good if the kids could understand this is not how their Dad wants to act, that it is his illness that makes him act that way. Sometimes these spurts can happen more often and that is why I wrote we just don't know. He might be waiting for something or someone. If you don't mind I would like to ask if you have released him yet for his Journey? It really helps him and you to give and take that release. Since I cannot be there please feel my spirit in the room sending you the best I can. I understand all too well what you and the children are going through.

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: [Sensitive] End is getting closer?

Michele,

Don't have much to add but want you to know that I too am there with you in spirit.  My thoughts and prayers are with you and your family .

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: [Sensitive] End is getting closer?

Michelle....It is said that the feelings of "hope" are the last to go not only for the patient, but for the loved ones as well. 
Please know that we are with you....all the way.
Hugs and love,
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: [Sensitive] End is getting closer?

Thinking of you.

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: [Sensitive] End is getting closer?

Michelle--my husband also has what I call "rally days." I try to enjoy that time with him. We can play cards or Dominoes and it feels like the old days. Then, the next day he sleeps 18-20 hours. Won't eat or drink much of anything. So, as everyone says, this is a roller coaster ride that none of us bought tickets for but are on the ride just the same. I am thinking about you and praying for strength for you and your family. Our children are grown and not living at home so I really feel sorry that your kids have to go through this. My husband was diagnosed in November of 2013. He is 63 years old and we will be married 43 years next month. Take care and God bless.

Re: [Sensitive] End is getting closer?

Our 13 year old Jack Russell terrier is behaving very differently to normal.  She was always an outside dog and never slept in the house.  Even after our other dog passed last March, she continued to live outside.  However, since my husband was diagnosed at the end of December 2013, she refuses to be outside.  She whines and barks at the door until we let her in.  She follows me everywhere and sleeps at my feet, wherever I am, during the day and at our bedroom door at night. It is as if she senses I need her company.  She is very deaf and has cateracts.  She is also full of lumps which dont seem to worry her.  The Vet says to leave her be as she eats well and does not appear to be in pain.  It will be a sad day when she has to leave for doggy heaven.  So yes, I think our pets are very aware of what is going on.