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How to deal with the end?

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Posted 4/1/2008 4:48 PM (GMT 0)
As a caregiver, I feel my most important duty is to make sure my husband is comfortable, I cater to him and wait on him hand and foot,his every whim. I am exhausted with this disease that is so up and down both physically and emotionally. He had a good day yesterday, nibbled all day long but then was up all night, we have increased his lactulose so that he is taking it 4 or 5 times a day if not more, he went 2 days without a bowel movements and I really stressed increasing the lactulose altho he hates the stuff.
I am barely sleeping. My biggest fear is waking up with him dead next to me, I dont know if I can handle that, I have always had a major issue with death, not even touching baby chicks or anything. I had a traumatic experience in my early 20's at a funeral and have been terrified ever since.
Every time he has a good day, I am wondering if this is the rally before the end, when he has a bad day I am wondering is this it? There is no family or friends to give me a break and sometimes I feel like I am the one going nuts.
Add to this the financial stress, He will not tell SSI that he is living here because he feels it is only temp and they will stop his SSI and medicaid if they find out because he also has a home and they will force us to sell one of them, His home has a lein for back child support so it cannot be sold. They cannot make me sell my home, it was mine before we got married. Because he wont tell them I cannot get a check for taking care of him. I know that sounds selfish and money grubbing but I have had to quit my business (turn it over to someone to run) and job to care for him 24/7. I dont know how I am going to pay my bills this month, my business is new so it does not make anything yet, My daughter is running it for me right now and we are barely able to make bills there.
He is very paranoid these days about everything and everyone is out to get him. He will not make out a will or other paperwork that needs to be done asap, he has a mentally disabled son that has to be provided for the future, I have always told him that jr can stay with me, I am his step mom and have been for 7 years, I love him like he was my own. He is at the other house right now, I talk with him on the phone 4 or 5 times a day and go over there every day to make sure he has what he needs. He is 27 and able to function and care for himself to a large degree but he will never be able to live completely on his own. there are specific things he is able to do but that is about it. He was supposed to come live over here with us but my husband does not want his house left empty, he is afraid someone will break in.
We have to go for the testing next week, everything hinges on that in my husbands mind and will decide what we do in the future.
Regardless, he cannot be left alone, he has to have someone with him at all times, my step son is not capable of caring for him, my husband laid in a coma on the couch when he first got sick for 3 days and my stepson didnt have enough sense to call anyone. My husband has always had a rule if he is asleep do not wake him up and that is written in stone, so jr didnt try to wake him up.
Sorry to go on so much, sometimes I just need to unload all of my worries and concerns and have no where to voice them. I try to talk with my husband about it and he get very defensive and obstinate. I guess he just does not realize exactly what I have done to my life in order to care for him. He had a girlfriend but she disappear as soon as he got sick. Him and my son did not get along in the past so he does not even want my son on the property, my son is 16 and just recently went to live with his dad but he was here at the house every day after school. Now he is not allowed over here at all, my dogs are locked outside, they have never stayed outside all the time in their entire life, my German Shepherd has been in training as a service dog, going everywhere with me since she was born and now all of the sudden she is outside all of the time, at 7 months. I cannot spend time outside ( which I love to do) because he wants me in here all the time, usually sitting next to him on the couch watching tv, I have no use for tv, I am used to working 2 jobs, not just sitting around all the time. its like he has to have every second of my attention every minute of the day. I understand this, he is facing the end of his life and that is extremely hard to deal with, i dont even want to think about mine.
I am not complaining, I love my husband and will do whatever it takes to make him as comfortable as possible as long as he needs me to, just sometimes I feel overwhelmed.
Therese
Posted 4/1/2008 7:48 PM (GMT 0)
Mischa, you are certainly carrying a big load right now. I can see why you are feeling over burdened. Are you still legally married to him? I only ask because if you are most states have laws determining how much of his estate you would get when the time comes. Does your handicapped stepson have a mother? Where is she in all of this? As far as you staying by your husbands side 24/7 that is a choice you are making. I'm not trying to be bossy or rude but you are an adult and can certainly go outside for awhile if you want to. It sounds like he is not only very ill but afraid to be alone. You can help him with that by setting some minor guidelines and providing him with a system that is reasonable to call for you if he really needs you. Dansbrother had a good idea with the bell. If he calls you for no reason then he needs to be told that it was not an emergency or bathroom call and you don't appreciate it. Don't be fooled Mischa, he is only doing what you are allowing him to do. So bottom line is it's not all his fault. Rather then blame him or yourself just change the rules you have been using. Obviously you have sacrificed more than most but the end result is you will become ill yourself and probably resentful of the demands he is placing on you. By changing the way it currently is and doing some of the things you want to do (like going outside with your dog) you will feel better and not be quite as stressed. I would start with these issues then move on to other ones that are bothering you. Has the Dr told you that he is end stage? If he is then his SSI will or at least should not be affected. The Dr can Rx for 24 hour care (which you are supplying) or hospice care. Either way it protects his SSI. You could certainly check on that if you are thinking of getting some extra help or to reassure your husband that his SSI is protected.  
Posted 4/2/2008 12:48 AM (GMT 0)
Mischa, I third what dan'sbrother and Shelly have told you. I have been there exactly where you are. If you have to take a 5-10 minute walk with your dog while he's sleeping..... do it. So if he wakes up and gets upset. You are an adult and need some breathing room. If you don't take care of yourself I can almost guarentee you, that you will end up sick . And if you get sick who's going to take care of him then? Or you?
Near the end of my caregiving for my husband I developed Valley Fever. All I knew was that I was always tired and running low grade fevers. I was working 40 plus hours a week plus taking care of him. After he died I ended up finally going to the doctor for me. That's when I found out that I had had it for months and some how my body over came it. It leaves scars on your lungs. It could have killed me and probably almost did.
All I know is that Jesus must have been watching over me because I sure as heck wasn't. I was too busy taking care of him and working.
This is why I keep telling all of you caregivers to take care of yourself. Take a little time everyday to recharge your batteries. It's too easy to get caught up in it all and forget about you.
If he has any family ask for help. Don't be stubborn like I was. I didn't hurt them. It was me that got hurt.
Mishca we are telling you this because we care. So please take care of yourself too.

Thoughts and prayers..........
Posted 4/2/2008 5:06 AM (GMT 0)
Thank you so much for listening to me vent and for your advice. Yes we are still married and yes he has always been very controlling, he is even more so now and because I am the sap that I am I comply rather get into an argument and cause more stress. Yes he is feeling a loss of freedom, he is not allowed to drive anymore and that chaffs him.
I think in many ways I feel guilty that he has had to deal with this disease this far by himself, on the other hand I had no way of knowing that he was ill and it was of his own doings that we separated, he had hit me and my son so I immediately packed up and left, that night. I know he was out of control with the alcohol but that is no excuse. Regardless, no one should have to die alone and he has sat with 4 of his closest friends while they passed, he was their caretaker until the end and I always promised him that I would be there for him, just sometimes its hard to bite my tongue and not feel some resentment.
Shelly- My stepsons mother walked out on my stepson when he was 4 months old, my husband has always been a single parent of a handicapped child until we got together. I do not want my step son to go to a state run facility, I want him to live with me where he belongs. Yes the dr's have told him he is endstage, actually they told him he may have a couple of more weeks at the max because his lungs are filling up faster than they can siphon them out. He is set to prove them wrong, he is a very stubborn german, he will be able to prove the wrong ( I hope).
My hubby has a cell as do I, that was a good idea about the walk, I love walking in my neighborhood. I just hung a birdfeeder outside the window today for hubby to watch the birds, he really enjoys that.
I talked with him this evening after reading the forum and your suggestions, I didnt, couldnt let him know that I was sharing his prob with others..... ouch would that be a chewing. Anyways, we have come to an agreement that will give me a little downtime. My fav way to relax is to grab my laptop, run a hot bubblebath, light some candles, turn off the bathroom lights and watch a good movie, that gives me 2 hours of relaxation. I will have my cell in case he needs me he can call me but that would give me 2 hours of downtime :)

He has had another good day,I took him around town to pay his bills and yesterday and today he has been eating and snacking alot, seems hungry every couple of hours so I make sure there is something in there I can throw together quick for him to eat. We are making sure he drinks more lactulose because he is eating more. One thing tho..... He has not had his stomach drained but once in the last 5 weeks, all of the fluid has been staying in his lungs. This morning his ascites in his stomach was not noticeable, his tummy was pretty flat, this evening he belly looks like a 9 month preg woman and his ribs hurt and right under his ribs on the right. Usually it only does that when his lungs are full. He has stopped smoking as of friday ( not 1 puff since then, wish I could say the same) and he is thinking perhaps instead of the fluid going to his lungs, perhaps it is going to his belly instead because he stopped smoking. Not sure there but we will see thursday when he goes in for his next tap.
he just got up and walked to bed, he suddenly isnt feeling well at all, I will be back another time.
Ya'll are great and I really appreciate the common sense advise and understanding, it does help tremendously :)
Therese
Posted 4/2/2008 5:16 PM (GMT 0)

nono  mischa, i,m not trying to tell you what to do, but since your the one giving up everything so you can take care of him, maybe he should give a little and let your son there and the dogs in the house that wouldnt be much to ask him for after all that is your house. i know he is very ill but sometimes they know what they are doing. you sound so tired and a lot angery sometimes you have to vent. i lost my father to liver disease in december of 06 and it was horrible and he didnt drink infact he loved to see my dog, i gave up two part time jobs just now catching up on bills. the  little bit of money he left i had to used most of it because i wasnt working, thank god for my husband hes been taking the load i just got back to work 4 months ago. it would be nice for you to have some enjoyment to lake having the dogs in and your son tell him how important it is to you. god bless and good luck

 annette

Posted 4/5/2008 12:32 AM (GMT 0)

Mischa, you are going through so much I was once a caregiver its so hard, you do the best you can, why is it at the end they get mean hurt your feelings say and do things they never woiuld have before?It was my mother in law ...then one night all alonr Ilost my precious husband his heart , I love this man still as  Idid then with everything I am with my soul it seeks him out in my dreams. he was there by my side touching me,I am so sorry for what you are going through,and what you will go through,beore he passed i had dreams he  had passed in the last week I really didnt know at all,these dreams were my signs It was coming but not  I woke up as you said but at night all alone. May GOD bless you its so hard,you are an excellent person so much heart! Ialso loved the yard gardening but when he passed no moreinterest in anything Its been over five years but hes by my side,again May GOD bless!

Posted 4/5/2008 4:06 AM (GMT 0)
Thank you for your words of wisdom.
Sometimes I almost feel as tho I am bipolar, with so many ups and downs lol Actually, rereading my daily notes ( journal) I can pinpoint the highs and lows, they coincide exactly with when he comes thru another rough period so I think it is the stress of him being really down health wise and being on pins and needles.
He has had a great couple of days, should have known, the lull before the storm, this morning he wasnt feeling so good, stayed in bed til about 3, ate a couple of spoonfuls of food and was done, he has basically been a couch potatoe today and he had other plans yesterday. He just has to be feeling ok monday and tuesday, I dont want him going to the hosp for testing in a bad way, they might say he is to sick for a transplant.
Therese
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