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Reply by grammakim04

10 Apr 2014, 6:02 PM

Yes, we have had the Palliative Co-ordinator talked to us. The choice has been left up to me. My husband has said when he is totally "bedridden" he will agree with it but the decision to move him to a hospice is totally up to me??? The care team is more concerned about me with how exhausted I am right now.

The fact that he doesn't want the respite workers coming into the home is another concern because I do need break with his health declining.

My husband is only 68 yrs old and suffers from so much pain due to medical condition.
I'm going to talk to my Pastor tomorrow morning then the Palliative Coordinator before I make my decision. I just want to have peace about it knowing it's the right one because I love him so much and want what's best for him.

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Reply by marstin

12 Apr 2014, 1:20 AM

Hi Kim,

I was reading your latest post and wondered if you'd had a chance to talk to your Pastor and whether he had any solutions to help you through this. It's so difficult to have to be the one to make all of the decisions and hope that they are the right ones. I don't think there truly is a right or wrong way of doing things. As much as you love your husband, you sound like you are at breaking point and if that happens, you won't be able to be of any use to him. Is he able to think clearly or is he quite drugged up? I found as time went on with Len that his ability to be reasoned with was not the best. He sometimes became quite agitated. I wonder if there is a way for you to have him placed in the hospital for a few days and see how he reacts while you manage to get some much needed rest. I know that this is less than ideal but your health is at risk. Len was only 62 when he passed away and it was so difficult to watch this strong, vibrant man become a shell of himself and suffer like he did. I understand how this torments you to see what is happening to the love of your life. Remember that you count too.

Hugs,
Tracie

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Reply by grammakim04

12 Apr 2014, 2:38 AM

Yes, the meeting with my Pastor went very well. He is very understanding of my situation. Unfortunately, he & his wife lost their 6 yr old son to cancer 1 1/2 yr ago and has gained alot of compassion from living thru that journey.

While we talked, he agrees that it is time to consider a hospice and I've been able to come to peace with it. My Pastor is going to come over in the next couple of days and help me talk to my husband about it and then I will begin with the admission procedures.

I want to be his wife and be there for him. It would be nice to have someone else take over the "nursing" duties so that I can hold his hand, read to him and just watch a movie.
I want whatever time he has left to be a special time for us.

Right now I am so exhausted and stressed out that I am more concentrated on making sure he's getting the right amt of meds, what are his pain levels, taking his blood pressure/pulse rate and recording everything...24 hr care. I've been doing this for almost 2 yrs.

Now that his journey is close to the end...I want our time together to be peaceful & special...he is my soul mate.

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Reply by Aphasia Sufferer's daughter

12 Apr 2014, 4:15 PM

It's important to see the reality. Nursing staff will do some of the work. And you will be able to go home and rest.

BUT they will also disappoint. Sometimes they will talk at him and not to him. Doctors will not get there or not get meds on time. His food may be delivered to him, but no one may be there to ensure that he eats it. You will have to be there to watch to see that basic work gets done and to form positive team relationships with the staff. Things will go along swimmingly and then the staff will let you down. They're people and get in ruts. There are union politics that dictate what they will and won't do.

If the palliative care place is in a hospital then the staff will have to keep notes in the room. If it isn't, then the notes won't be on his chart in the room and will often not be up to date when you get there. So you'll have to check you loved one anyway to see if the pain is really bein managed, if he has diarrhea etc.

Weekends and holidays are when the worst care occurs because weekend staff tend to be part timers who aren't there for continuity during the week. If your husband is frail, you will want to ensure that you're there more from Friday to Monday morning than even other times of the week. This isn't ideal as you probably want to have a social life again - go to church or whatever.

I am not saying this to put obstacles in your path - I am saying this because it is generally true and everyone who has a person in hospital or in a nursing home or in palliative care says the same thing --- but often it isn'tsaid BEFORE you commit so you're taken by surprise.

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Reply by marstin

12 Apr 2014, 5:03 PM

Hi Kim,

I think that when people go through tough times like your Pastor has, their compassion and understanding for other people's pain grows. I truly hope that the Pastor is able to convince your husband that your choice is the best one for both of you.

Len was in Palliative care before they allowed him to come home to pass away. The nurses were amazing and so easy to talk to. Just knowing that he was well cared for when I wasn't there was such a relief. I do agree that weekends and holidays can be a tough time though. We were taking Len out for a day pass on Father's day as they were trying to balance out his medication before we took him home permanently. A nurse hustled in with a bunch of medication for him and said he was free to go and that if he didn't come back by Tuesday that they would give his bed away then off she went. We were in shock. Of course Len was very excited that they were setting him free and was ready to go, while we were going over in our minds that we were not at all prepared for him to come home to stay at that point. Knowing how desperately he wanted to be home we didn't have the heart to burst his bubble so we took him home and did the best that we could. In hindsight I would have made sure they did what they had promised in respect to his medication because he had paperwork that desperately needed finishing up and was totally unable to do it because he was so drugged up.

For you, I think this will help you to be able to spend that quality time with your husband and get some much needed rest. You've been doing this for so long and to have someone else take over the medical side of things so that you can just devote yourself to being with him will make a huge difference to your state of mind. We all have our own personal journey when dealing with this and I hear relief in your words that you can let go of the nursing side of things. He will be well cared for and so will you.

Hugs,
Tracie

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Reply by grammakim04

12 Apr 2014, 7:39 PM

Thank you Tracie for your encouraging words. I can so relate what you went thru when Len left the hospital. I felt the same way when I brought Chuck home after his first stroke. They handed me this huge binder with all this info on diet, medications etc with regards to Strokes & Heart Attacks, a packs of prescriptions, a list of precautions to look for and his doctor shook my hand and said good luck and apologized he couldn't do anymore to help.

I was terrified to bringing him home, but I guess our survival mode kicks in and we do what we much.

Aphasia's Daughter, this is not an easy decision for me. I'm not looking for a place to just leave my husband so I can have a"social life", I found that very offensive. My life is caring for my husband and my concern is that I am so burnt out that I need to consider an alternative.

I'm sorry your situation was bad, but it doesn't help for you to beat me down when I'm struggling so much trying to do what is best for my husband.

The hospice I am considering allows the family to be there 24 hrs if they choose to be. If I want to stay the night, they bring in a cot for me. I can have all my meals with him, if I want to. They take over the care aspect so I can just be his wife and be there for support plus they will also offer me support, which I need.

My Pastor knows several families who have had loved ones that have stayed at this particular hospice and he has been there on visitation. He had nothing but positive praise for this place.

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Reply by KathCull_admin

12 Apr 2014, 9:28 PM

Dear Grammakim
"I want to be his wife again..". It sounds as though the hospice will a place where that can happen. What a relief it must be to know that he will have round the clock care - meals and laundry taken care of, and emotional/spiritual support for you, your husband and your family.

I wanted to tell you how much I like the picture you have posted in the discussion forum. The two of you, with his arm on your shoulders - a wonderful picture of love.
Thinking of you Grammakim on this Saturday afternoon....
Katherine

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Reply by grammakim04

12 Apr 2014, 9:44 PM

Thank you Katherine.

My husband is my "soulmate". We have been married for 30 years and he is my world and that is why I am struggling so much with this decision. I only want what is best for him and unfortunately with me at the point of exhaustion and just feel I can no longer do that for him.

I just hope he can understand this when we talk to him next week about the hospice. He has suffered some brain damage from the strokes and has problems comprehending things and becomes frustrated. I have always reinforced with him thru all of this that I love him and hope he will remember this.

Thank you for the support, it means so much.

Kim

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Reply by moderator | modératrice

13 Apr 2014, 12:19 AM

Hi Aphasia Sufferer's daughter,

How you must have suffered to see your loved one treated so poorly by others to whom you entrusted her care. Recent news stories about situations in long-term care facilities indicate that your experience is not an isolated one. However, please keep in mind that that not all facilities are the same. There are differences between long-term care homes, palliative care in a hospital setting and residential hospice. in fact the Quality Palliative Care in Long Term Care Alliance is working to improve palliative care attitudes and care delivery in long-term care facilities. Here is a brief overview of the work they are doing:

End-of-life Care in Long-term Care.

For anyone who may be interested, Some of the different settings where palliative care is offered are explained in this article.

What is palliative care?

Hi Kim,
I understand you are looking at residential hospice. I know this isn't an easy decision It seems like you are looking at the decision very objectively and seeking counsel to help with your decision-making.

My experience with hospice matches the picture that your pastor painted. In fact, getting the support and medical care for your husband that hospice care can provide can give you the space to be your husband's partner and soul-mate again.

I know I told you about these 2 threads with you elsewhere on the forum, but I thought I would re-link them here in case other people reading this conversation would like to see them. In these 2 threads Virtual Hospice members talk about their experiences with hospice:

I'm confident that you will make a good decision that is right for you and your husband.
Thinking of you both.
Colleen

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Reply by Digger

14 Apr 2014, 11:52 PM

Grammakim,

If Chuck wants to die at home he has to admit that he is in fact dying. Not easy for him to do as you have described. Denial on his part places you in the awkward position of having to make the decisions.

Dying at home is a team affair with most of the burden falling to the family. Has his doctor declared him to be 'palliative'? This can get the ball rolling - home care, special help etc. (the situation in B.C. maybe different in Alberta).

From what you say, hospice sounds like the best option. Share your thoughts, be blunt, ignore his denial and anger while he can still respond to you. He is selfish - you can tell him that from me.

Dale

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