I think the end may be near

Have you considered bringing in Hospice or at least some type of assistance, other than family?  I know how difficult that is to contimplate, but there comes a time when you need that type of help.  His doctor should be able to connect you with the right resource.

Is he on oxygen?  It might bring him some level of comfort and help with the symptoms you describe.

I know from my experience with my sister, that she was far more comfortable both physically and mentally with the comfort care that Hospice was able to give.  It also was a great help to our parents and myself to know that we had experienced resources to call on.  My sister was ok with Hospice after we explained that they were there to help and if she got better they would no longer be needed. 

My proayers are with you both.

Marie who loves kitties

Sandi1 said:

I spoke to my husband about

I spoke to my husband about Hospice.  He said NO, he didn't want strangers looking after him - he wanted me or my sister.  problem is my sister lives in Canada, and i can't just get her down here at the snap of a finger.  He mom is coming to stay for a few days starting tomorrow - so at least i will get a bit of a rest.

Sandi

 

It doesn't sound like his mental state is at all good at the moment, so I don't think he can make this decision in a logical way.  Having seen my sister through the end of her life, I really have to say that trying to do this without hospice will be tremendously difficult, maybe impossible.

I don't know if he was ever able to tell you what he wanted the end of life experience to look like, but if he wants to stay at home, and not be in the hospital, you will need to have some help.

The other thing that I would check into is having the doctor make sure it's not his meds making him confused.  Depending on what he's on, interactions can lead to what you're describing.

Keep us posted, and hang in there as best you can.

Hi Sandi,

You might want to take some time off of work now if possible.  Also, if you have a large couch next to his Lazyboy, you might to sleep there at night since he'll probably start walking around at night and might go outside.  He's also going to require more medical care during the night. Hospice needs to be called in now.  He may also need a catheter too and additional pain meds that hospice can help with.  Remember Hospice won't be directly caring for him, but will take his vitals and be able to provide pain meds.  And you'll need to make the decisions now for him since he's losing his ability to make logical decisions. Get as much rest now as possible since things can get difficult very quickly at this point.  Is his brother close by that he can help you with care?  I've been through this, so please reach out if you have questions or concerns.  

Take care,

Cynthia

Sandi1 said:

I spoke to my husband about

I spoke to my husband about Hospice.  He said NO, he didn't want strangers looking after him - he wanted me or my sister.  problem is my sister lives in Canada, and i can't just get her down here at the snap of a finger.  He mom is coming to stay for a few days starting tomorrow - so at least i will get a bit of a rest.

Sandi

 

My grandmother said no too but we did it anyway and it was good that we did.  The woman was phenomenol, did her nails and her hair, read her stories, spent hours looking at pictures with her.  My mom found her through the church.  She wasn't a nurse, just an assistant.  You can even tell him you're bringing in the person to help you which is true.  This way he doesn't feel like he's being cared for by a stranger and you get the help that you need.  Even if the person does the housework while you take care of your husband.  I hope things get better.  Do reach out to a local community center for help.  Meals on wheels or something along those lines.  Every little bit helps.

Sandi1 said:

I spoke to my husband about

I spoke to my husband about Hospice.  He said NO, he didn't want strangers looking after him - he wanted me or my sister.  problem is my sister lives in Canada, and i can't just get her down here at the snap of a finger.  He mom is coming to stay for a few days starting tomorrow - so at least i will get a bit of a rest.

Sandi

 

Hospice care is often mis-understood. 

With in-home Hospice care they are not there 24/7.  They have nurses/doctor who come on a scheduled basis to assess BP/pulse, breathing, overall comfort.  They also will get the comfort care meds. which you can administer per their instruction. 

The Hospice group arranges any physical equipment...beds, table trays, oxygen, and the like to be delivered. 

They also have trained volunteers who will help with showers/bathing, general care items like Depends, disposable bed pads, bed pans, and the like.

The family/friends are still needed and wanted to be with the patient and call Hospice with questions, concerns, needs.

While there is no one physically there 24/7, they are only a phone call away to advise you and direct you on how to make your loved one more comfortable.  They will also come when there is a significant change in the patient's situation.

Marie who loves kitties

Sandi1 said:

I spoke to my husband about

I spoke to my husband about Hospice.  He said NO, he didn't want strangers looking after him - he wanted me or my sister.  problem is my sister lives in Canada, and i can't just get her down here at the snap of a finger.  He mom is coming to stay for a few days starting tomorrow - so at least i will get a bit of a rest.

Sandi

 

Confusion and mental challenges are common at this stage with liver problems.  I wouldn't be inclined to argue but just take the carefully considered responsibility for best interests.  Increasing confusion and sleepiness may make this decision less difficult each day.

Extra help, even around the clock, is often needed to not be overwhelmed or alone/unattended at some events.   Since hospice is a trigger word for many people, I would avoid it, and instruct any caregivers to avoid "hospice" like the plague, replacing them if necessary. They are the "help", "nurse" etc. until the patient is better, which may be all through the normal hospice period too.        

First, I am so sorry for what you are experiencing.  I have been where you are now at so I do understand just how painfully difficult it is.  If at all possible, arrange for time off work, even if it is just to work shortened days.  You fear the end is coming and from your discription of things, some of which my George also did, you are probably correct, although it pains my heart something awful to write this to you.  If he has some best friends, invite them over to spend an hour or so or whatever amount of time to sit and chat with your hubby.  I did that a few days before my George died and he truly enjoyed seeing them.  Ask them to reminace about past things they did not about the present.   My George also waived his arms as if towards something or someone and as if he was talking to someone or something but his words were slurred.  Later, in talking to other widows, I found they experienced the exact same thing. 

Don't ever lose hope that things may turn around for one never knows.  You know your husband the best, you know his condition the best, follow your heart if you need to make difficult decisions.

If you need anything, just send me an e-mail or if you need to chat, send me an e-mail with a number to reach you. 

I am so sorry.

Love, Hugs and Understanding - Tina

If you don't get help, you won't be around to help your husband. You'll end up getting sick yourself.

i hope things start getting better for you.

Lin