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I think the end may be near

Sandi1's picture
Sandi1
Posts: 277
Joined: Aug 2008

Each day my husband is a little worse than the day before.  He is now starting to tell me things like, what happend to that plate of food i had on my lap? when he hasn't been able to eat for weeks now, i mean a plate of food anyway.  He is constantly waving his arms around when he is sleeping, his voice is slurred and i can't understand what he says to me half the time.  He won't get up to use the bathroom - he says he will fall, so he prefers to use the urinal. i have never done so much laundry in my life.  Last night he told me that he keeps thinking that he is in the hospital and that he keeps hearing strange voices.  I told him the voices are the TV - he hasn't turned that off in over a week.  He sleeps in the family room on his lazy boy because he says the chair and bed in our room hurts his back too much.  it's fine that he wants to sleep there, but i'm getting weared out running up and down the stairs.  I have moved all of his items downstairs and most of his clothing.  This morning he texted his brother, the text was so disturbing and didn't make sense that his brother called me and asked me if he was ok, i called him and he said he was ok, then started babbling away about something.

I'm going to have his mother come stay with us for awhile, so i can at least have peace of mind while i'm at work and get a bit of a break on housework - i have just been too exhausted to do it.

Sandi

 

Lovekitties's picture
Lovekitties
Posts: 2943
Joined: Jan 2010

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's picture
Sandi1
Posts: 277
Joined: Aug 2008

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

 

annalexandria's picture
annalexandria
Posts: 2255
Joined: Oct 2011

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.

Helen321's picture
Helen321
Posts: 779
Joined: May 2012

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.

Lovekitties's picture
Lovekitties
Posts: 2943
Joined: Jan 2010

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

 

tanstaafl's picture
tanstaafl
Posts: 969
Joined: Oct 2010

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.        

fatbob2010's picture
fatbob2010
Posts: 396
Joined: May 2012

Have you consulted with your PCM about these symptoms?

May want to consider hospice whether he is happy about it or not.  Sounds like he may not be safe alone

He sounds like he may be in need of supplemental oxygen (?).  Good discussion to have with your Onc and PCM.

Hard to imagine working full time and having everything else going on...you must be hugely strong!!!

Regards,

Art

Helen321's picture
Helen321
Posts: 779
Joined: May 2012

It's weird but my first thought was this might not even be cancer related, it could be a stroke which goes with the need for oxygen so please do talk to the doctor about the whole situation.

LivinginNH's picture
LivinginNH
Posts: 1302
Joined: Apr 2010

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

Trubrit's picture
Trubrit
Posts: 1482
Joined: Jan 2013

You want to do what is right for your husband, and I'm sure you are so torn between doing what he wants and doing what he needs. 

Bless our members here, for giving you sage advice. Especially those who have walked the path that you are now walking. Please listen to what they are saying. 

My heartfelt prayers for both of you at this time. 

SUE

 

marbleotis's picture
marbleotis
Posts: 491
Joined: Mar 2012

I can tell that you really do need help.

This is too much to manage.  You may also want to be sure - if your husband is on meds - that he doesn't need that adjusted (your reference to him being confused and arms waving) - just my thoughts.

Please consider Hospice.  You will probably need to make that decision with the Doctor.  Your husband may not have the capacity at this time to know truely what is needed.

I send my thoughts and prayers to you both.

Annabelle41415's picture
Annabelle41415
Posts: 4266
Joined: Feb 2009

I'm so sorry that you are going through this it seems alone.  Please call hospice to get there to help you.  God Bless you and your husband through this difficult time. 

Kim

geotina's picture
geotina
Posts: 2059
Joined: Oct 2009

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

Kathleen808's picture
Kathleen808
Posts: 2306
Joined: Jan 2009

Sandi,

I am so sorry that your husband is having such a hard time and that you are exhausted.  Our sweet and knowledgable friends here have shared such good advice.  Everyone just wants you and your husband to get the help you both need right now. 

Holding you both in the light.

Aloha,

Kathleen

UncleBuddy
Posts: 632
Joined: Aug 2013

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

Cathleen Mary
Posts: 577
Joined: May 2011

Sandi,

i am so sorry that you are going through all of this. You have received a lot of tender, good advice here.  We all wish we could concretely lend a helping hand.  Please take care of you, too. Sometimes the most loving thing we can do is make decisions for those we love who can no longer make wise ones. 

Wishing and praying for strength and peace for both of you in these days.

CM

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