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Posted 8/3/2011 2:40 AM (GMT 0)
Hi Everyone, How are you all coping?  I haven't posted a thread for a while but have been 'popping in' to read others but finally have a chance to sit down and say Hi.

Things aren't going well here at all.  My husband Ben has deteriorated alot over the last few months, however the last four weeks have been so much worse.  As soon as I think things can't get worse, they always do and now I'm going day by day with him.  He is still at home and I'm caring for him the best I can.  I can't seem to get much assistance which is putting a fair bit of pressure on me I must say.  Ben is sleeping now 90% or more of the day away and so weak he can no longer walk without assistance.  I have to help him up to go to the toilet and then back to bed.  Sometimes he will get up to the couch for an hour or so and then be so exhausted I just on have to carry him back to bed.  I must say my back is killing! He is going blind and as of today can bairly see anything.  He also has stopped eating over the last 2 weeks.  Maybe has a mouthful of food every couple of days but that's it.  He complains of always feeling sick and has alot of pain in his stomach region.  The fluid in his legs has gone down but still in his abdomen however I don't think it is quite as bad as it has been.

Most of the time he is to exhausted to even talk and just stares at me with those big dark eyes.  He is very jaundice and his eyes are yelllow.  He said he is tired and just can't fight anymore.

It is the most painful thing to watch him fade away.  I spoke with our doctor two days ago and he said I can get him to the hospital whenever we are ready but as you know Ben has been very stubborn in the past and wanted to 'die at home'.  Having our 2 children in the house (Zac is 15yo and Phoebe is 18mths) I discussed the impact this would have on them and he has agreed for me to get him to the hospital when I wanted.  I just don't know when that will be.  How do I know when is a good time?  Obviously the doctors can't say how long he has left but I  was hoping if anyone could shead any light on this I would greatly appreciate it.  I have put pen to paper this week and tried to write somethings down as far as his funeral arrangements go but it feels so weird doing this.  Ben has been sick for years and often the doctors have said this is it and he pulls through it so I just don't know what to think.  However I have never seen him like this before.  It is so cruel.  Well sorry for venting everyone, I have no one else at the moment to talk too so thankyou.

Take Care to you all

Krista

Posted 8/3/2011 3:26 AM (GMT 0)
Krista-I am so sorry to hear that things are not going well for Ben. Blessed is he that you are working so hard to keep him comfortable and at home. Have you contacted hospice? They can help you and perhaps help with how to explain things to the children? I will keep both you and Ben and your family in my prayers.

Emma
Posted 8/3/2011 3:29 AM (GMT 0)

Hello, Krista.  Thanks for checking in.  I'm sorry to hear that things have gotten so bad, but that's the progression of the disease.  How are his vital signs?  Does he have labs done?  How about calling in hospice to give you some relief?  It really is difficult to know when the end is nearing.  If he is hospitalized, they can likely stabilize him with tube feedings and IV electrolytes, but that is really postponing the inevitable.  I'm very sorry that you find yourself in this position.

Hugs,

Connie

Posted 8/3/2011 8:36 AM (GMT 0)
hi krista, so sorry to hear that ben is worsening. you are being very brave in looking after him and your children. its so sad. make some calls and like the others suggested maybe get some help from hospice. thoughts and prayers for you all.
xxnatasha.xx
Posted 8/3/2011 3:26 PM (GMT 0)
Krista

This doesn't look good

I agree with others

Do you know hospice will work with you at home if that is your wish. They aren't there every second but will prepare you and him for a pain free transition.

If he were to need more help than you can manage maybe they could recommend a health aide or nurse to help -- at least at night.

If he isn't raging at you and the kids or bleeding all over, you maybe could manage with some help with his personal care

Best to you ALL at this difficult time

I had my dad at home with me bed bound his last year--diapers and all. We had shift help as time went on so I could work. Hospice came often.

When dad slipped into a coma, then died quietly 9 days later with no water or food along that last jourmey, the children were 5, 6, and 7. One of them told us she was sad and happy. Sad that he died, but happy he was home with us which was what he wanted. She is 36 years old now and I have tears in my eye remembering.

This is a difficult time but this is what "til death do us part" means.

Stay strong, Carol

Post Edited (MamaLama) : 8/3/2011 10:23:42 PM (GMT-6)

Posted 8/3/2011 10:10 PM (GMT 0)
Krista,

I'm sorry too that you  are where you are.....I think that not knowing what to do is sometimes the hardest part of dealing with this disease. I'm sure you'll make the right decision for you and your kids, as well as for Ben. My thoughts and prayers are with you............

Posted 8/4/2011 3:51 AM (GMT 0)
(((Krista))), I am so sorry about your husband's condition. My husband's journey was like Mary's the last 4 weeks.....lot's of sleeping and very little conversation. (Was very unlike him.) His eyes got really sunken in and skin tone was jaundiced. His urine dark. He had oxygen and asked for it to be turned up. He also asked for his meds that hospice had prescribed for him. With him asking for those two things I knew the end was near. Once he went into a coma.......he lasted about 2 days........It was the hardest thing that I have ever been through...I totally understand your feelings.............as do others.

Lot's of thoughts and prayers for you and your family.......
Posted 8/4/2011 4:30 AM (GMT 0)
Thankyou all so much, I really appreciate your comforting words. I have contacted hospice today and they can assist with showering etc when I need it which is good to have on hand. They are running a tight ship the lady said so they will try their best to assist me but can't be here more than once a day. At this stage I am managing so I said I would call when I really needed a hand. My son had a break down last night so after 3 hours of talking things through with him I know keeping Ben at home for the time being at least is the right choice. He appreciates knowing he is in the next room for if 'he just wants to tell him I love him'. Life can be so cruel, watching him fade away like this is so hard. My parents are on holidays at the moent and call in every couple of days and ask if they should come home. It is so hard to answer them because they have planned it for so long, I don't want them to come all the way have (5 days in driving at least!) and then he picks up but I don't want to be hear alone if he passes, every hard to know. Ben has complained over the last 24hrs of shortness of breath and he is just so weak. I see him try and fight it for about 5mins and then sinks further down. His urine output seems to be all normal but he is very jaundice. Thankyou all so much, you have no idea what your words mean.

God bless you all

Krista xxx
Posted 8/4/2011 4:32 AM (GMT 0)
Krista-prayers for you and yours tonight. Hugs and thoughts sent your way.

Emma
Posted 8/4/2011 5:04 AM (GMT 0)
Krista,

So extremely sorry to hear what you are going through. I understand you have contacted hospice, but please also have them come in to assess the situation in person. There are so many services they can offer that I know would be a huge help for you, if they feel hospice is necessary. They will work with his pcp and/or gastro/hepa to determine the best course of action, and should also have some services to help you and your children with this situation.

Post Edited (abysterical) : 8/3/2011 11:16:30 PM (GMT-6)

Posted 8/4/2011 10:48 AM (GMT 0)
Thanks abysterical, I have called them again this afternoon and they are going to come out tomorrow. I have also contacted my sons school today and they are going to arrange support for him at school which I think will help him as well. A friend today told me to start orgainsing funeral arrangements so I don't need to worry when everything falls apart (such as the director, flowers, eulogy, photos, etc) I started looking at some photos this afternoon and it just felt wrong organising these things before he has even passed and I still hold on to the hope he may improve and keep going for a while longer. It is funny what type of advice you get of different people. None of them have never been through anything like this but so many tell you what you should be doing. I know they all mean well but I must admit of the phone calls today were doing my head in! I ended up taking the phone of the hook, not nice of me at all but I just couldn't handle one more call this evening. Thanks again everyone for your support and advice. It is greatly appreciated.

Krista xxx
Posted 8/4/2011 3:19 PM (GMT 0)
Krista-don't feel bad at all for taking the phone off the hook. In dealing with the tough times that life has thrown my way over the years, I have learned to NEVER apologize for doing what you need to do to take care of yourself and your family. Never give up. Circle the wagons. Take the phone off the hook.

Emma
Posted 8/4/2011 6:11 PM (GMT 0)
Krista,  funeral arrangements can be made after the fact...you do it when you are ready........Spend as much time as possible with him..talk with him....hug him. Tell him how much you love him.  If there is any fences that need to be mended ..........now is the time for your husband to do it if possible.   For instance,  my husband was estranged from his daughter........I made sure that fence got mended before he passed.  

I think that your decision to keep him home for now is a good one.  Maybe the 2 younger ones can stay with grandma and grandpa or some other relative during this time.  

Lot's of thoughts and prayers.......... 

Posted 8/4/2011 6:30 PM (GMT 0)
Krista, hospice also offers respite services. Someone would stay with Ben for a couple of hours while you and the kids get out and do something, or you just go to get a manicure or do something for yourself. You need to be able to recharge and will feel much better for it.

My thoughts are with you at this difficult time.

Hugs,
Connie
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