Quality of Life

260 Rem · #1 03-02-2016, 11:15 AM

Once again, I will be the voice for my brother ... to give some insight into the quality of life issue.
My name is Roger and until six years ago I lived in Leduc. I was doing pretty good with my MS until a major flare put me in the hospital. Right up to that day, I managed at my apartment ... with a cane and was a regular with the coffee crew at Tim Hortons. The day things went south, my brother found me in my bath tub, and got me to hospital. Within a day I couldn't even roll over in bed and I had to face the reality that I would never be going home. Unfortunately, there is no facility in Leduc for young guys in their fifties ... just the nursing homes filled with oldsters and I didn't think that would be a good fit so I got into St. Joe's in Edmonton ... which I found was a bit disadvantageous because it was too far for all but one of my friends to come visit.
I have so much pain in my back (degeneration of discs in my spine) that I don't sleep much so I am awake early and lay in bed until staff comes to get me dressed and into my Broda chair. I no longer have enough function in my right hand (none at all in my left) so I can't turn on the TV or even push the call button if I need my nose wiped. Damned nose drips all the time! It takes two staffers to get me on to the lift and of course any movement shifts by back and if I could scream ... I think I would. Once I am sitting up and can swallow, a nurse comes with some morphine so after a half hour it takes a bit of edge off the pain unless I am having spasms ... Sometimes they turn on the TV, sometimes not. Sometimes they face me towards the hallway so I can see staff walk by until someone comes to take me for breakfast. Staff will only give me purée or thickened liquids so breakfast is not much of a highlight, especially when there are not enough staff to get around to everybody before it gets cold. I wish I could tell you what I have for breakfast but I have no idea what it is ... probably porridge. After breakfast someone takes me back to my room and sometimes they turn on the TV so I watch whatever channel is tuned, drift in and out of sleep if the pain permits. About mid-morning when staff comes to make the bed they wheel me into the hall so I get a bit of change of scenery, then back in front of the TV if it is on, or just sit looking at the dark screen if not. About noon, staff comes to take me for lunch. Typically puréed "mystery meat" and if it is a special day and we get mashed potatoes which I recognize. If it is Monday or Thursday, my brother brings me "real food" ... a hamburger and chicken strips. (We did a "feed at risk" agreement so family and friends can feed me solid food ... I know it could cause me to aspirate and infect a lung, but if that is how I die, I am OK with that). After lunch, staff takes me back to my room. By this time, the pressure on my back from sitting upright has brought on waves of excruciating pain. My electrical system is shorting out and the spasms are now full force. My legs stiffen, right arm is waving around out of control. Nothing I can do but wait for med time because I can't raise my voice loud enough to be heard or push the call button even if it has been left in my lap where I can reach it. Finally, more morphine and a bit of relief. For the last six months or so, the drugs don't relieve the sharp pain, nor do they reduce the spasms.
Until about a year ago, they would put me back on the bed with a bed pan a couple of times a day, but now the pain from getting moved in the hoist is just to bad ... so now I have to crap in my diaper. Even after a year, I find it tough to go in my pants and have never got over the humiliation I feel. Thank goodness nobody comes to visit in the afternoon because I smell pretty bad. Getting changed and cleaned up is another walk through hell with the pain of getting moved. Some days I don't eat much with the hope that I won't have a bowel movement, but they give me laxatives...can't win some battles.
Well, you're probably getting tired of listening to me whine so I won't go on about the other half of my day, but it pretty much mirrors the first half.

norwestalta · #2 03-02-2016, 11:39 AM

Makes me sad to read this. To be truthful I didn't read it all. I buried a friend yesterday. Diagnosed with liver cancer around Christmas where the dr said he'd have a month to a year to live. Heart breaking news no doubt. I am grateful that my friend went fast and painless but I didn't think it would be this fast.

You take care of yourself roger and know my thoughts are with you.

HunterDave · #3 03-02-2016, 11:39 AM

So horribly sad.

walking buffalo · #4 03-02-2016, 12:12 PM

260 Rem,
Respect and admiration to your brother for his willingness and effort to share these intimate details, and to you for being by his side.

Has your brother expressed a desire or decision to end his life at this point or within specified parameters?

I can't help but be deeply concerned with this comment.

" My electrical system is shorting out and the spasms are now full force. My legs stiffen, right arm is waving around out of control. Nothing I can do but wait for med time because I can't raise my voice loud enough to be heard or push the call button even if it has been left in my lap where I can reach it."

What do you have to say about this Salmon Slayer Lenny? Is this situation due to a failure by the patient or family to remedy?

Zuludog · #5 03-02-2016, 01:18 PM

Wow. I want to comment on this but am at a loss for words. My heart goes out to your brother and to you & your family. I can't even begin to imagine what this must be like for him or for the ones who love him.

Salmon Slayer Lenny · #6 03-02-2016, 01:49 PM

Quote:

Originally Posted by walking buffalo

260 Rem,

I can't help but be deeply concerned with this comment.

" My electrical system is shorting out and the spasms are now full force. My legs stiffen, right arm is waving around out of control. Nothing I can do but wait for med time because I can't raise my voice loud enough to be heard or push the call button even if it has been left in my lap where I can reach it."

What do you have to say about this Salmon Slayer Lenny? Is this situation due to a failure by the patient or family to remedy?

With all due respect walking buffalo, I'm surprised at your attempt at flaming and trolling in this context. Not only is it disrespectful to the O.P, it's disrespectful for the story they are sharing and their brother.

If you want to discuss it, start another thread. Don't hijack this one.

Salmon Slayer Lenny · #7 03-02-2016, 02:00 PM

260 Rem,

With the utmost sincerity, I am sorry for your brothers situation and what he is experiencing. Words can not possibly express anything of value and would be pointless.

If I could humbly attempt to to try to offer some words of suggestion to advocate on behalf of both you and your brother to try to improve upon his comfort, or lack there of. These suggestions may have already been attempted, and if so, I apologize. If they haven't, maybe consider them.
- have you spoken with the patient care manager at the facility and also your brothers primary Physician? Identify
- request a patient care conference with family, your brother, the patient care manager and his primary Physician. Hopefully they will also include an Occupational Therapist and/or Physio Therapist, nutritionist and dietitian. Request a pharmacist attend as well if possible, they can make the best medication suggestions and recommendations based on patient need, not doctor preference .Repeat your concerns in this team environment.
- Find out his goals of care status and whether they are treating him as 'terminal or palliative'. These can significantly change how a patient is managed and treated.
-Be respectful but persistent, be calm but firm. Don't take no for an answer but be willing to compromise.
- Be a sqeeky wheel. Don't stop until you are satisfied.
- If these things don't get anywhere, escalate it up the ladder in a respectful way.
- Lastly, you can also contact an Alberta Ombudsmen with patient care concerns and complaints. ombudsman.ab.ca

If you would like any other help at all, if you have any questions or any other concern, please feel free to P.M me.

260 Rem · #8 03-02-2016, 02:38 PM

Roger has not expressed a desire to die with the assistance of a doctor. He/we did a comprehensive Pesonal Directive about ten years ago in which he expressed a desire not to be kept alive through any aggressive intervention. Within the last year we also met with nursing staff to confirm the "no resuscitation" aspect of the PD.
When I feed him, we always watch the noon news and that is how we got around to the idea that it might be a good idea to tell the story from his perspective. The "dying" thing is a topic that we both seem to be avoiding. I think he would rather suffer than put me in a position to get involved in that decision. I don't want to bring it up with him ... and I don't know how to explain my reluctance...I am torn as I don't want him to die, nor do I want him to suffer like he does. So we take in what is going on in the news and avoid the elephant in the room.

260 Rem · #9 03-02-2016, 02:51 PM

Salmon - Yes, we have looked at the options for pain control and are confident that staff is managing the situation in a professional and compassionate manner. We just upped the morphine again last week and he can ask for a "top up" between the spaced dosages. At this point it boils down to being alert with pain, or swimming around in a drug induced trance. At this point, he wants to be awake, but I know how tired he is getting.

Salmon Slayer Lenny · #10 03-02-2016, 03:00 PM

Quote:

Originally Posted by 260 Rem

Roger has not expressed a desire to die with the assistance of a doctor. He/we did a comprehensive Pesonal Directive about ten years ago in which he expressed a desire not to be kept alive through any aggressive intervention. Within the last year we also met with nursing staff to confirm the "no resuscitation" aspect of the PD.
When I feed him, we always watch the noon news and that is how we got around to the idea that it might be a good idea to tell the story from his perspective. The "dying" thing is a topic that we both seem to be avoiding. I think he would rather suffer than put me in a position to get involved in that decision. I don't want to bring it up with him ... and I don't know how to explain my reluctance...I am torn as I don't want him to die, nor do I want him to suffer like he does. So we take in what is going on in the news and avoid the elephant in the room.

260 Rem,

forgive me if I came across wrong, I wasn't attempting to talk about the 'elephant in the room' part. The Do Not Resuscitate (DNR) part is simple, the Personal Directive and you as the agent (assuming you are) is the easy part.

I was coming from the perspective of attempting to address some of what you shared from a pain, suffering or discomfort perspective as well as a quality of life position.

There are simple things that can be done from a pain/comfort management perspective, such as an air bed (if not done already). to complex management of medications from analgesia (not all need to be opioid narcotics, Toradol is a very effective NSAID like ibuprofen that can be given by injection or intravenously) to sedatives (midazolam) for contractures and spasms to things like haloperidol for restlessness and aggitation to name a few examples.

Regardless of what some may say here, his comfort level should be able to be improved. It may take some trial and error to figure it out.

If I can offer some advice, don't be afraid to talk about the elephant in the room. You may be surprised, you may each avoid the conversation in fear of upsetting the other but you both think the same thing. It never hurts to try. Don't let something be left unsaid. If you feel like sharing a story, a 'remember when' moment, or even apologizing for something, make an attempt. If you don't do it now, you may regret it once it's too late.

Don't make assumptions as you may end up being wrong. If your brother doesn't want to talk about something, I'm sure he'll tell you. I think you will find that being open and honest may come easily if you try. On the other hand, he may shut you down and withdraw. This too is also normal.

Also, don't be afraid to be selfish. You are involved in this as well and don't need to be walked all over either. If you have something to share, you can share it without needing a response. This is part of the grief process, this doesn't have to start after the loss of your brother. It's a dynamic process that is going on right now.

Salmon Slayer Lenny · #11 03-02-2016, 03:06 PM

Quote:

Originally Posted by 260 Rem

Salmon - Yes, we have looked at the options for pain control and are confident that staff is managing the situation in a professional and compassionate manner. We just upped the morphine again last week and he can ask for a "top up" between the spaced dosages. At this point it boils down to being alert with pain, or swimming around in a drug induced trance. At this point, he wants to be awake, but I know how tired he is getting.

Rem,

that's the difficulty of the razors edge of balancing too much vs too little. One thing for a breakthrough (top up) could be the Toradol/ketorolac I suggested in the post above. It works in a synergistic way when combined with a narcotic.

Also, there may be value in looking at something other than morphine. Patients build up a tolerance to repeat medications, especially opioid narcotics, switching can help with that. Also, going with something a little more potent but giving less can sometimes be of value.

Here's a quick reference for examples and food for thought:
http://www.practicalpainmanagement.c...rminal-illness

albertadeer · #12 03-02-2016, 03:44 PM

Some people are strong.

Others bear the weight of the world on their shoulders and miss not a step.

Your brother is a warrior, a true testament of pure strength.

My prayers and well wishes are sent, what

Look into holistic healing. Many may not believe but I'm sure your brother would take greatly.

BodyTalk might be something to look into.

Best wishes on the mysterious journey of life.

260 Rem · #13 03-02-2016, 03:56 PM

Salmon - thanks for the heads up on toradal, I will check it out. I have oversimplified the med regime as "morphine", it is just the most recognizable to me among the cocktail of drugs.

Salmon Slayer Lenny · #14 03-02-2016, 04:48 PM

Quote:

Originally Posted by 260 Rem

Salmon - thanks for the heads up on toradal, I will check it out. I have oversimplified the med regime as "morphine", it is just the most recognizable to me among the cocktail of drugs.

N.P Rem, it can be very complex for sure. Feel free to ask any time at all, glad to help any way I can to make some suggestions, questions to ask or refer you where you need to go. It's easy to get lost in the healthcare system.