Just got back from the hospital at 1:00 AM. Michael was admitted for dehydration. He hasn't eaten or taken any liquid for 3 days and had been asleep for about 36 - 48 hours. He is now intermittently awake but unable/unwilling to swallow leaving us with a decision..feeding tube or not. He has said "if I can't do things for myself, then no feeding tube." He also has advanced directive saying no tube.
Four days ago he was eating and swallowing food like a hungry lumberjack. No problem at all. Now this.
I am so not ready to lose him and in denial that this is happening. He's in there. I can see it in his eyes. He tried to talk tonite but nothing made sense. He's still a very strong man and his body won't give in. I'm so afraid of going back to the hospital at 8:00 AM and having to say no tube. I know what that means and this man is everything to me. I'm devastated tonight.
I'm praying IV fluids will pull him out of this and he'll swallow again. Any experience anyone? This is CBD..(I had to tell the Dr. what CBD is.)
Liz
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This is outside of my 'knowledge zone' I'm afraid.
Having said that as I read your post my mind was saying IV fluids and give him time to recover. Which is what they are doing.
Liz too has a directive for not having a feeding tube. One day I will have to face what you are, hopefully temporally, facing now. I am not looking forward to that day, but when it comes I will hold firm to her wishes.
Really wishing you the best and that Michael pulls through and returns to oral liquids and food.
Thanks for your responses. I agree that I need to honor his wishes. I guess that I expected that he would be more sick when this decision had to be made. I have to wonder how he would feel if he could see his condition as it is.
I had no problem saying he doesn't want to be resuscitated, however the feeding tube feels different. It feels like saying even though he seems ok now, I am going to ignore that and let him starve. I know it's not that cut and dry but feels that way. This is so difficult. If I were asked this question yesterday before he was hydrated, I certainly would have felt more comfortable with this decision. I have to keep in mind, what I would be saving him for....more suffering? I wonder if I could ask him now, if I could make him understand. The whole problem is that he can't swallow.
I know I'm rambling. I really appreciate waking up to your help. I keep second guessing myself as this is such a difficult time. I'm sure the right words will come to me when I need them. Thank you. Love this site.
Hello Liz. Hope the next doctor you have has read up on CBD!
The situation you are facing is the "thin end of the wedge". Not sure how to advise. I guess an IV overnight may bring improvement - but am not a medic!
I would scream and shout for a referral to a neurologist and/or palliative care specialist. Feel it is urgent to get a plan in place for your husband to have best quality care at this time.
That care plan needs to be understanding of his illness, that he is probably near the end of his life, and that he is given the opportunity to make his own decisions. If you see understanding in his eyes, then you need to find a way for him to communicate with the doctors. And those are good reasons to scream and shout!
My husband was always at his best at breakfast. He ate cornflakes and milk and drank his tea and was most cognitive. Often by midmorning he was asleep and/or unable to communicate.
Kevin_1 has a tried and tested way communicating with hand squeezes and simple yes/no answers which has worked with Liz. Try that. Talk with him and see if you can find out his thoughts.
If he has not had steady weight loss recently, not eating and drinking will take a while. He has possibly got to the stage where he is no longer hungry or thirsty. Or has he already made a decision not to eat?
I was faced with a very sudden deterioration in CBD when my husband suddenly lost the ability to hold himself upright. That became the 'new normal'. Sadly, it is not usual to see a change reverse, but is not unusual to see a sudden, sometimes catastrophic change.
I understand how devastating that is, and how frustrating it is to be faced with doctors who don't know or understand what is happening, and have to treat the symptoms they see in isolation. They don't see CBD every day. And that is so frustrating as we carers DO!
So find that palliative care specialist! Talk to him and get a neurologist in the picture too. You must be your husband's advocate and get for him the best care for the rest of his life, so that whatever is ahead for you both, your husband has quality, peace and respect, and you have quality time together.
Put your courage bravely on that sticking point and GO DO IT! And be brave when you hug your husband!
Liz so sorry to hear what you both have been going through, you have everything in place for what Michael wants, so sad though, my heart goes out to you. Yvonne xxxxx
The one thing I’ve learned read the posts on here is how unpredictable these diseases are. The IV fuilds may do the job. Anticipate the worst and hope for the best.
I cant add anything more to Jen's and everyone's wise replies. I can only feel what you're going through and wish you strength and courage as you make decisions. I hope Hospice and a palliative specialist will help.
Please keep in touch, if you have time - we will be following this to see how it goes in the coming days.
So sorry about this. My husband has CBD and we went through exactly the same issue just over a year ago. My husband indicated that he did want a feeding tube. At that time he had recently still been speaking and walking and his admittance to hospital was part of a sudden precipitous decline so typical of the illness. Since the feeding tube we have had a further year of ups and downs and he has had some quality of life but in the end CBD has taken its horrible course just the same. He is still here but now totally paralysed and unable to move/talk. I think often about the decision and whether it was the right one but in the end it was his choice.
Thinking about you . Anne is right. You need courage and strength and I am sure you will find them. I found the helpline at PSP and the local hospice team both really helpful I have only ever met one hospital consultant who understands CBD. It is so rare.
I hope for the best outcome in the circumstances for you both.
If you knew what was in his head you might find that he would still rather be here with you and doesnt regret the decision at all...but how can you know?
I'm so sorry. I had exactly the same experience with my husband. We were both in agreement about DNR and no PEG but when it all happened so quickly I felt distraught. It felt he had fallen off a cliff.
He came back home with a good palliative care team - purried food, thickened drinks. After a few weeks he just decided he had had enough. He had always said he would die when he was ready and he did. He could only communicate by squeezing but was very clear. I couldn't blame him. Its a dreadful battle.
I found it so difficult and am in tears as I write.
Thank you Jean and everyone who shared. I haven't been able to write until now but things have turned around a bit. Hydration brought him back to his baseline. Still needs much encouragement to chew and swallow but is eating chopped food at this point. Will be re evaluated today before he is discharged back to the nursing home and hopefully will be placed on regular food diet.
I will be looking at other nursing homes to move him ASAP. He has deep tissue pressure sores on his butt discovered on hosp. admission. Incontinence care has been an ongoing battle between the nursing home and myself. They told me his skin was good every time I asked but obviously that wasn't the case. So upset, probably more with myself than anyone. Guilt is terrible.
Tried to communicate with Michael with hand squeezes but he couldn't respond. Did speak with Dr at Penn who agreed with what is being done regarding care and progression. Said this very well could happen again (dehydration) and we'll be back to the same choices but at least I'll know what we are going to do at that point.
Hope this makes sense. I will have a battle ahead today with the nursing home and must go out looking at facilities to make the change so that he gets proper wound care. I'm so angry.
One more thing..wasn't able to get into this site...it wouldn't connect for awhile. I was panicking. AM I supposed to delete old posts so it doesn't fill up? Didn't want to do that because I go back and read old ones sometimes. Certainly don't want to get locked out.
There was a problem getting on site on Sat which has now been remedied. I had a problem too. You don't need to delete anything.
Pleased he has rallied. It is not acceptable for him to have bed sores. It is poor nursing. Also he should not get dehydrated if he can drink. Better to be seen as a bit of a tartar by the home ! [ refer to Kevin ! ]
Thanks Jean. Because I am there for so many hours, I assure he drinks. However for those 3 plus days, he wouldn't drink when awake but was sleeping for almost 48 hours. So afraid that will happen again as I was warned.
Oh I am definitely a bit of a tartar already and that was before I knew of this new problem. (I can guess what a bit of a tartar is) I need to get him out of there but need to improve his care in the meantime.
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